Guestbook Entries

Date Entered:7/3/2006
Name: Kim Goldman
Email: itsmeagain_kim@yahoo.com
City: French Lick State: Indiana
Comments:
I was dx'd with RP in 2003. I work for an optometrist, so I am able to keep up on the latest of what is going on. Right now stem cell research is promising. If anyone needs to talk, email me. I will try to help, this is a terrible thing to deal with. I have info on low vision groups, and help. KIM

Date Entered:6/27/2006
Name: Dr.Rajesh Parekh
Email: projectmoksh@gmail.com
City: Bangalore State: India
Comments:
The RNA TRUST in Bangalore has formed a support group for genetic eye diseases.The address is C/o SANTOSH HOSPITAL Promenade Road Opp.Coles Park Bangalore India

Date Entered:6/18/2006
Name: Martha
Email: absweetpea8@aol.com
City: houston, State: texas
Comments:
have had rp since 1998. it seems to be getting worse. had my eyes checked and new glasses in jan. i really cannot see out of my glasses anym more . now when i leave ghouse i get very panicky i hate this disease.

Date Entered:6/12/2006
Name: natalie mather
Email: benzajakey@hotmail.co.uk
City: blyth State: uk
Comments:
my little boy is 2 and has been diagnosed with rp since he was 18month he has no night vision and is registered partially sighted we do not know what type of rp he has as dr says its not following the typical pattern as he has some macular as well as peripherall pigmentation is anyone in similar circumstances or can give any advice

Date Entered:6/3/2006
Name: DAVID
Email: trox63@yahoo.com
City: BRONSTON State: KY
Comments:
WHAT THE LATEST RESEARCH FINDING ON RP? WHAT IS NEEDED MOST IN THIS RESEARCH OF RP? DOES THE GOVT. HELP IN THIS RESEARCH OF RP? DO YOU THINK THE GOVT. COULD DO MORE.

Date Entered:5/28/2006
Name: wallace juliet
Email: wallacejuliet@.jahoo.com
City: bad fallingbostel State: germany
Comments:
hello i was wondering from wich agaes can you see if my son got Rp he is now 14 months old my dad has got Rp

Date Entered:5/26/2006
Name: Dean,Clough
Email: transdoctor@vermontel.net
City: Perkinsville State: Vermont
Comments:
Hi i have known about my rp since 1992,the last 5 years my vision has been slowly going away.I work from home where i work on automatic transmissions,which is a passion of mine.I have been teaching myself to do this without looking at it.and am getting pretty good at it.I have been gifted with a photographic memory,I picture things in my mind and retain them.I am hopeing for a cure and have been reading alot about the stem cells and I just cant help but feel that there will be a cure.I have even started thinking about how my life would be with normal vision,and i havent done that since i found out i have rp.anyone interested in talking please email me transdoctor@vermontel.net

Date Entered:5/18/2006
Name: tracy hardware
Email: www.tray1973@aol.com
City: folkestone, kent State: england
Comments:
hi,my son sam hardware was diagnosed with rp in january 06, who is entered in the guess book. we do not know what type of rp he has yet, but the eye doctors say it's rare he has night blindness,tunnel vision, and poor central vision when it come's to reading ect. It's the poor central vision that has confused them as they say that's normally the last thing to go. Some days it's worse than other's. I wondered if there is any one out there who has a good understanding of the different type's or some-one who has a child with the same thing. I would love to here from you samuel is 11 years old. Thanks tracy.

Date Entered:5/1/2006
Name: Walt Raineri
Email: wtr1977@yahoo.com
City: SF Bay Area State: CA
Comments:
John: You should be very proud of this site. Great job. All: I have RP and if any of you live in the SF Bay Area, please contact me. I am organizing several events for the Silicon Valley Chapter of the Foundation Fighting Blindness, and our Spring Conference is June 3, 2006, with presentations on dealing with transportation issues for the visually impaired, and an update on research efforts in the retinal degenerative disease area by Dr. Duncan of UCSF. Lastly, I have learned quite a bit about adaptive techniques this past year during which I lost most of my vision and would be more than happy to share my thoughts with anyone interested in learning more about dealing with the effects of RP by those affected.

Date Entered:4/20/2006
Name: Rose Bryan
Email: rmsb45@aol.com
City: Lexington State: NC
Comments:
I would like to know more about RP .My Dr. said I have a rare case of it , it is only in the left eye as of now. I am a 60 year old ,have know this was RP in mt 2o s

Date Entered:4/14/2006
Name: Ashley
Email: ashley_verhoef@hotmail.com
City: haarlem State: The Netherlands
Comments:
Hai everybody, I'm 17 years old and i have Retinitis pigmentosa, are there any people how has this to?? And people how wanna talk about it? Tnx!! Ashley

Date Entered:4/5/2006
Name: narzeena
Email: nazreena_lantra@hotmail.com
City: dubai State: U.A.E
Comments:
hey!!plz feel free to mail me anytime day or night!!!!thanxxxx

Date Entered:3/25/2006
Name: Cheap phonecards
Email: john.madsen@gmail.com
City: Tampa State: NY
Comments:
I have been looking for sites like this for a long time. Thank you!

Date Entered:3/23/2006
Name: sam hardware
Email: samue1994@aol.com
City: folkestone State: england
Comments:
hi i am 11 years old and only found out i have rp in january i have tunnel vision and night blindness my family and myself would appreciate any information and helpful tips on how to cope with my condition thanks sam

Date Entered:3/19/2006
Name: falguni viplavkumar shah
Email: jetauto@sify.com
City: vadodara State: india
Comments:
please help me if any treatment is there.

Date Entered:3/2/2006
Name: Jim Mooney
Email: jrmtx@sbcglobal.net
City: Brackettville State: TX
Comments:
I am 52 years old and was diagnosed with RP when I was 17. For those 35 years I have tired to be "normal". It gets harder and harder with each passing dya.

Date Entered:2/28/2006
Name: Mildred Roma
Email: mildredroma@yahoo.com
City: Muskegon State: MI.
Comments:
I was diagnosed on Feb.22,2006 with RP. So I am tring to learn as much as I can about it.

Date Entered:2/27/2006
Name: Julie Moore
Email: octsissy1991@yahoo.com
City: Raleigh State: N.C.
Comments:
i love the site and i enjoy reading about it! My mommy is blind (had rp) thanks a lot for telling others about RP!

Date Entered:2/24/2006
Name: M L Burgert
Email: m80burgert@yahoo.com
City: Bluffton State: SC USA
Comments:
sister found this site for me and I plan to read it and one day soon will write my experiences with this dreaded disease that I was diagnosed with in 1976 - I thank God for allowing me to keep a good portion of my sight - "legally blind" is not the worse thing that can happen to one.

Date Entered:2/19/2006
Name: Mr Roberto Sainaghi
Email: roby@wananchi.com
City: Nairobi State: Kenya
Comments:
No Comment

Date Entered:2/13/2006
Name: Laura
Email: Ld2270@yahoo.com
City: loretto State: ky
Comments:
Hello, I was just told that I have RP at the age of thirty eight years old. None of the could tell me why I was losing my eye sight. It has seemed that had gotten worse quick. But anyway thanks for the website. Good luck all.,., Laura

Date Entered:1/30/2006
Name: Nigel Ashby
Email: vipskippy@hotmail.com
City: welwyn garden city State: herts england
Comments:
Hi im 48 had RP since i was 21. married for 25 years now divorced, found a great new partner, who i thought would never happen to somebody with a site problem & a Guide dog. Still have good central vision but no periphial vision. The biggest thing i have found since loosing my site is my independece, god i loved driving so much. Still as i keep telling people there are people a far lot worse of then me. So onward & upward & lets all pray that a cure can be found to help us all if anybody wants to chat feel free to contact me

Date Entered:1/30/2006
Name: Nigel Ashby
Email: vipskippy@hotmail.com
City: welwyn garden city State: herts england
Comments:
Hi im 48 had RP since i was 21. married for 25 years now divorced, found a great new partner, who i thought would never happen to somebody with a site problem & a Guide dog. Still have good central vision but no periphial vision. The biggest thing i have found since loosing my site is my independece, god i loved driving so much. Still as i keep telling people there are people a far lot worse of then me. So onward & upward & lets all pray that a cure can be found to help us all if anybody wants to chat feel free to contact me

Date Entered:1/23/2006
Name: rajath
Email: rajath5657@gmail.com
City: bangalore State: karanataka/india
Comments:
i am rajath 21 years old . i have rp and glucoma wanting to share experienceses and tips about coping with low vision well it is easier said then done as i know how difficuilt it is to cope up with it its possible i say but not probable.

Date Entered:1/20/2006
Name: Patricia
Email: lilprincesspaty@yahoo.com
City: Los Angeles State: Ca
Comments:
Im 31 year old with RP since birth. I attend college for a major in Child Development. I would like to help child who have special needs.

Date Entered:1/19/2006
Name: Ruta Piekuviene
Email: rpiekuviene@one.lt
City: Vilnius State: Lithuania
Comments:
Hellow. I have RP. I am 36 years. Does somebody have any information about micro-acupuncture treatment or herbal treatment of our disease? Can these methods be helpfull? And about vit. A therapy. Please, write for me. I would like to comunicate with friends, who has the same disease. God bless you

Date Entered:1/18/2006
Name: Lamp
Email: cbet@newmail.ru
City: Not Entered State: Not Entered
Comments:
No Comment

Date Entered:1/17/2006
Name: Talish Hussain Toor
Email: talish2k@yahoo.com . talishh@hotmail.com
City: 848/32 Kehkishan ST # 2 New Gulgasht Multan 60700 State: Pakistan
Comments:
jwen.com provides healthy activities to patients of RP.It is a source of a lot of information and links worldwide.I am 31 years old.I was a Maths Teacher but I have lost my job due low vision.I cannot read the normal prits.I have gethered a group of RP effected persons on a plate form and we have founded an NGO " RP Foundation of Pakistan" for the welfare of RP patients but our activities r limited due to lack of funds.I as the president of this NGO keep on trying to develop links between the Rp patients of different areas.

Date Entered:1/17/2006
Name: Talish Hussain Toor
Email: talishh@www.google.com
City: 848/32 Kehkishan ST # 2 New Gulgasht Multan 60700 State: Pakistan
Comments:
jwen.com provides healthy activities to patients of RP.It is a source of a lot of information and links worldwide.I am 31 years old.I was a Maths Teacher but I have lost my job due low vision.I cannot read the normal prits.I have gethered a group of RP effected persons on a plate form and we have founded an NGO " RP Foundation of Pakistan" for the welfare of RP patients but our activities r limited due to lack of funds.I as the president of this NGO keep on trying to develop links between the Rp patients of different areas.

Date Entered:1/17/2006
Name: Talish Hussain Toor
Email: talishh@www.google.com
City: 848/32 Kehkishan ST # 2 New Gulgasht Multan 60700 State: Pakistan
Comments:
jwen.com provides healthy activities to patients of RP.It is a source of a lot of information and links worldwide.

Date Entered:1/12/2006
Name: isabelle FRuh
Email: isha@mag-net.com
City: Prince George State: BC,canada
Comments:
I'm 53 years old,been diagnosed with RP since 3 years.My doctor says the motor vehicle branch will remove my driver's license.oh,well,I will deal with it.Is there any chinese herbal medicine you know of which might help slow the progression down? Any hint is useful,thanks. Isabelle Ruch,Prince George,BC

Date Entered:1/9/2006
Name: Rob Smith
Email: smithra54@aol.com
City: Temperance State: Michigan
Comments:
I have RP. I am 51.

Date Entered:1/9/2006
Name: SAEED AZHAR SHEIKH
Email: saeed_azhar_green@yahoo.com
City: sialkot State: pakistan
Comments:
Respected Sir, Sub: SEEK HELP FOR RETINITIS PIGMENTOSA ----------------- My name is Muhammad Saeed Azhar aged 48 years old status married; I am suffering from eye Disease of Eye R.P since 30 years ago. I have tried so many Eye Specialist Doctors throughout World.But sorry still no success in this regards. I shall feel obliged if you would kindly help and tell me. IS THERE ANY TREATMENT OF THIS DISEASE? And suggest better solution with medicine for curement. Please find enclose Here with latest doctor,s report for your consideration. Your immediate Attention and an early reply will be highly appreciated. Results of Electrophyslogical test Flash Erg, Right Eye A. 20.00 uv Left Eye A.22.00uv 16.00ms 5.25ms B. 19.50uv B. 19.00uv 88.50ms 29.00ms B/A 0.97 B/A 0.88 Flicker Erg Right Eye NILL Lift Eye NILL The whole world to please help me in this regards and be kind to contact Me on the my E-mail address. Saeed_azhar_green@yahoo.com saeed56_99@hotmail.com Yours faithfully SAEED AZHAR SHEIKH Sialkot Pakistan

Date Entered:1/9/2006
Name: SAEED AZHAR SHEIKH
Email: saeed_azhar_green@yahoo.com
City: sialkot State: pakistan
Comments:
Respected Sir, Sub: SEEK HELP FOR RETINITIS PIGMENTOSA ----------------- My name is Muhammad Saeed Azhar aged 48 years old status married; I am suffering from eye Disease of Eye R.P since 30 years ago. I have tried so many Eye Specialist Doctors throughout World.But sorry still no success in this regards. I shall feel obliged if you would kindly help and tell me. IS THERE ANY TREATMENT OF THIS DISEASE? And suggest better solution with medicine for curement. Please find enclose Here with latest doctor,s report for your consideration. Your immediate Attention and an early reply will be highly appreciated. Results of Electrophyslogical test Flash Erg, Right Eye A. 20.00 uv Left Eye A.22.00uv 16.00ms 5.25ms B. 19.50uv B. 19.00uv 88.50ms 29.00ms B/A 0.97 B/A 0.88 Flicker Erg Right Eye NILL Lift Eye NILL The whole world to please help me in this regards and be kind to contact Me on the my E-mail address. Saeed_azhar_green@yahoo.com saeed56_99@hotmail.com Yours faithfully SAEED AZHAR SHEIKH Sialkot Pakistan

Date Entered:1/9/2006
Name: SAEED AZHAR SHEIKH
Email: saeed_azhar_green@yahoo.com
City: Sialkot State: Pakistan
Comments:
Dear DoctorsI want your kind attention for this e-mailI am 48 Year Old, I am suffering from Retinits Pigmentosa (AN EYE DISEASE) I felt this Disease at the age of 18. I consulted many local and Foreign Specialists but no improvement took place.I appeal eye specialists of the word to extend their advice and suggest treatment for the diseas.My contact as M.Saeed Azhar Sialkot-PakistanTel:++92-52-3540765,3255265 Fax:++92-52-3257085 E-Mail: saeed_azhar_green@yahoo.com

Date Entered:1/4/2006
Name: Xiaoping Xia
Email: xiaxiaoping@tom.com
City: Guangzhou State: China
Comments:
I am a eye doctor specialised in RP treatment research. I will work hard in this field

Date Entered:1/4/2006
Name: Janet Toms
Email: janetdede@sbcglobal.net
City: Benton State: AR
Comments:
My best January 1st gift was a reading with Will. I am grateful, and recommend him highly to everyone !!!

Date Entered:1/2/2006
Name: Suzanne
Email: wtap2005@bigpond.net.au
City: Mildura State: Australia
Comments:
I have just been told I have Age Related Macular Degeneration, The Dr said that there is no treatment for the type that I have. I am 56 years old and started to loose my sight 8 months ago in my right eye, i have now started to loose the sight in my left as well. any information would be appreciated.

Date Entered:1/2/2006
Name: Saeed Azhar
Email: saeed_azhar_green@yahoo.com
City: Sialkot State: Pakistan
Comments:
Respected Sir, Sub: SEEK HELP FOR RETINITIS PIGMENTOSA ----------------- My name is Muhammad Saeed Azhar aged 48 years old status married; I am suffering from eye Disease of Eye R.P since 30 years ago. I have tried so many Eye Specialist Doctors throughout World.But sorry still no success in this regards. I shall feel obliged if you would kindly help and tell me. IS THERE ANY TREATMENT OF THIS DISEASE? And suggest better solution with medicine for curement. Please find enclose Here with latest doctor,s report for your consideration. Your immediate Attention and an early reply will be highly appreciated. Results of Electrophyslogical test Flash Erg, Right Eye A. 20.00 uv Left Eye A.22.00uv 16.00ms 5.25ms B. 19.50uv B. 19.00uv 88.50ms 29.00ms B/A 0.97 B/A 0.88 Flicker Erg Right Eye NILL Lift Eye NILL The whole world to please help me in this regards and be kind to contact Me on the my E-mail address. Saeed_azhar_green@yahoo.com saeed56_99@hotmail.com Yours faithfully SAEED AZHAR SHEIKH Sialkot pakistan

Date Entered:12/23/2005
Name: terry smith
Email: alexanderfeller@yahoo.com
City: homer city State: pa
Comments:
ariane sprengling farley ariane if you happen to read this msg and would like to talk just google your name for my email or icq

Date Entered:12/22/2005
Name: Tracey
Email: tracey65@btinternet.com
City: Glenrothes State: Fife
Comments:
My father has RP, and I have just been told that I am a carrier. I have 3 kids. 16 year old boy, 10 year old boy and a 6 year old girl. Both my boys have just been diagnosed 6 months ago. Found this site very usefull. Check out my dads site www.whitestick.co.uk

Date Entered:12/17/2005
Name: mark hughes
Email: mhsnowman@wmconnect.com
City: chickasha State: ok
Comments:
has anyone used echo eye drops

Date Entered:12/15/2005
Name: Faisal
Email: blacka72@yahoo.com
City: Amman State: Jordan
Comments:
I am 33 old, I have dignosed by RP five years ago, I quit my work last year. I used to have life and work, its very diffecult to be a disabled man, but I trust in God, and we should continue our life, and forget that we were a normal people in the past. God bless you all

Date Entered:12/14/2005
Name: Gregory A. Browning, O.D.
Email: gabod@msn.com
City: Kenova State: WV
Comments:
Nice clean info site for my patients - Thanks GAB

Date Entered:12/10/2005
Name: RAMON TIRADO JR
Email: ALLAH621@AOL.COM
City: BROOKLYN NY State: NEW YORK
Comments:
I AM A 38 YRS OLD SINGLE STRAIGHT MALE. LIVING WITH RP. I WAS DIAGNOSED IN 1999 WITH RP. AND I HAVE BEEN LIVEING A FINE LIFE,EVENTHOUGH I WOULD NOT LIKE TO HAVE RP I NOW I DO, SO I MAKE THE BEST I NOW HOW. MY REAL FEAR IS STAYING TOTALLY BLIND. SO I PREY DAYLY TO GOD TO KEEP ME SEEING.THOUGH THEY SEE BETTER THEN WE.WE WILL ALWAYS SEE. THANK YOU

Date Entered:11/27/2005
Name: Alex Oddie
Email: follin928@bellnet.ca
City: Chicago State: IL
Comments:
z320d783dc7f56883a7caee34ec479229z Good work, nice webpaqe.

Date Entered:11/14/2005
Name: Allan
Email: bear3t3@yahoo.com
City: Winchester State: VA
Comments:
let us not get lost in the lessons of life But loose ourselves in the lesson of life.

Date Entered:11/14/2005
Name: Barden Carrusthers
Email: barden.8724316.carrusthers@hotmail.com
City: Not Entered State: Not Entered
Comments:
I just found out one of my oldest friends has RP. Any advice on how to help? barden.8724316.carrusthers@hotmail.com

Date Entered:11/6/2005
Name: Vince Catanese
Email: vmcatanese@aol.com
City: Indianapolis State: IN
Comments:
I have RP. I am 44 years old and see very well during the day, but have some trouble at night. I am trying to do all that I can to cope, compensate, and delay the progression with diet, healthy routines, sunglasses during the day, vitamin A, and regular checkups. However, there is only one word that describes my state of mind: "scared".

Date Entered:10/24/2005
Name: kyle langley
Email: pamlangley2002@yahoo.com
City: durban State: SA
Comments:
excellent

Date Entered:10/20/2005
Name: debbie
Email: dcrocker@npsne.org
City: norfolk State: nebraska
Comments:
I have retinitis pigmentosa and am always interested in new info and low vision aids and finding other people with RP

Date Entered:10/2/2005
Name: James
Email: jimboandkimbo2004@yahoo.co.uk
City: Birmingham State: England
Comments:
Hello to you all, James here, was diagnosed 4 years ago. just looking for RP sufferes to talk to give me an email, hope to hear from you soon!

Date Entered:9/29/2005
Name: Scott Holmes
Email: msh_tigerfan_02@yahoo.com
City: Warner Robins State: GA
Comments:
Hi, I have had RP since I was very young. I am now 25, and I still have a hard time accepting the fact I have this disease. I would love to talk to anyone about RP issues. Thanks.

Date Entered:9/25/2005
Name: Sian
Email: Boodie-boo@hotmail.co.uk
City: Leicester State: UK
Comments:
Hello everyone!!! Firstly just like to say this is a execellent website and found it very useful. Iam a 17 year old girl, who has had rp all my life but only dignosed 3 years ago. The rp is inherited but iam the only 1 in my family who has the condition. Although my family are very supportive i would like to find other people with the same condition to chat to.So if you would like to chat then i would be very grateful so please get in touch Thanks alot Sianx

Date Entered:9/18/2005
Name: Christy AE
Email: bradybunch7122000@yahoo.com
City: Keystone State: Florida,USA
Comments:
No Comment

Date Entered:9/14/2005
Name: yvette rodriguez
Email: Not Entered
City: Beeville State: Texas
Comments:
No Comment

Date Entered:9/13/2005
Name: Chris
Email: rossgraham.4.btinternet.com
City: London State: england
Comments:
i is just lokin for chat sites know any but no msn tis is great

Date Entered:9/8/2005
Name: Allison Bordessaq
Email: allisonbordessa@yahoo.com
City: Forestville State: CA
Comments:
I'm praying for a cure for RP. Goo dluck to all and God Bless.

Date Entered:9/8/2005
Name: James A. Hall
Email: hall2164@charter.net
City: Bristol State: TN
Comments:
Very helpful information on this page. I was diagnosed with RP in 2000 at the age of 35. The doctors and staff at the Johnson City Eye Clinic and Southeastern Retina Associates are just great.

Date Entered:8/30/2005
Name: Jaime Bastek
Email: xxxgwennabee69xxx@hotmail.com
City: webster State: ma
Comments:
I just wanted to tell you that my name is Jaime Bastek too...thats really cool...

Date Entered:8/28/2005
Name: Sean - or the Blind Swordman
Email: itchynscratchy71@yahoo.com
City: San Francisco Bay Area State: Caleforneeya
Comments:
Well, folks ... it's been over a year since I posted this message: "Well, i have had night blindness since i was a kid. Then i was diagnosed with RP two years ago in 1998. It's been cool, but I think my vision has worsened somewhat in the past several months. I am dismayed that there is absolutely nothing in this world that can help us with our RP disease. But, of course ... the braniacs can stuff a TV in a minivan or come up with a DVD player for "better clarity." Dammit! I want better clarity for my eyes, folks! Why do we ooh and aah about these useless toys and gadgets when our very own Superman is still stuck in a wheelchair? Please don't insult me by saying that these things are not possible. If we can clone a few farm animals for Farmer Bob's sicko nephew, then we can certainly make a few thousands of eyes for retinal eye transplants. Or the microchip implants ... man, with all the technology out there, certainly a few whiz kids can create something for us. You know what it is? Little or no funding. Most of the $$$ comes from the usual budgeted allottment to our universities and research labs. No more ...Please, do what you can.If I become "legally blind" then I will choose my own destiny, not one that God has intended for me. Since then I have struggled with this demon called "RP." But I tried to be more optimistic about it. I got married and started a new life. Things are going great and all that. But every single day I am reminded of what I cannot do. It's hard, everyone, to hang on to the youthful zest of life when my eyes have already retired and been put to the pastures. But still, I try. I have now accepted the fact that I will probably need to tap into community resources to help us find affordable housing (in which we can still keep even after I may go blind) and employment (to pay for the house!) that I can do with limited eyesight. If anyone have any ideas about what a blind dude can do for a living then please give me a holler. Until then I will continue to try to keep cool about this ordeal because I now have a family that I love very much. It is just now that they are begining to know how deep my problem is. Good luck and I'll check in every now and then. Oh yeah ... thanks John." Yep, what has happened since then - nothing except for the feeling that my eyeballs are slowly dissolving into mush and my mind is wandering - where does it go? I have a baby girl and I pray that she has her momma's orbs and not mine. FFB seems to have some good info about their research and I saw some low vision aids on other websites. Which led me to this question: Yo, John Weinberg - where are you? You set this website up for all of us and is considered the best site out there, according to the internet. However, we haven't seen anything new in several years, man. Have you abandoned your crusade? Thew only thing going on this website are the people who continues to write in the guestbook. We would like to hear from you and what you have been doing to combat your own difficulties. Get off them duffs and get to work - you got some catching up to do, sonny! Hahaha - anyway, I still have my sense of humor and hope you all do just as well. Ciao! Sean

Date Entered:8/25/2005
Name: Emily
Email: Not Entered
City: Hereford State: England, UK
Comments:
Hey.. Am jus saying thanks for this piece. It helps me to understand the disability of my boyfriend, he has RP. Now i can try and understand more the depression he goes through because of this.. Though i obviously cant feel it as much as him, However, I can try and help him through it easier. Kyle, if ur readin this, ima b here for u forever =) love u.. Thanks again. Emily

Date Entered:8/24/2005
Name: Rhonda Frede
Email: OhioLPN02@aol.com
City: Cincinnati State: Ohio
Comments:
My brother has RP. He is the only one in family to have it. Very happy to see websites like this to help educate us on the matter.

Date Entered:8/22/2005
Name: Tanya Johnson
Email: tdarealest03@yahoo.com
City: SIlver Spring State: MD
Comments:
I am 27 years old and I am currently in the army I was diagnosed with RP in 2000. My night vision is badly diminished but I can still see great during the day. I am getting out of the army now (I have to due to this diease)I am very interested in a cure if anyone knows of anything please inform me via e-mail.

Date Entered:8/22/2005
Name: Tanya Johnson
Email: tdarealest03@yahoo.com
City: SIlver Spring State: MD
Comments:
I am 27 years old and I am currently in the army I was diagnosed with RP in 2000. My night vision is badly diminished but I can still see great during the day. I am getting out of the army now (I have to due to this diease)I am very interested in a cure if anyone knows of anything please inform me via e-mail.

Date Entered:8/18/2005
Name: Marie
Email: Toni.Tinkerbell@blueyonder.co.uk
City: Liverpool State: England
Comments:
I Was diagnosed with RP when i was 35 im now 45, It was a hard time for me knowing i would one day go blind and that was the first and last time i ever felt suicidal. I have now come to terms with having RP but hope that one day there will be a cure. My Sister who lives in New Zealand also has RP. Its comforting to know your not alone.

Date Entered:7/19/2005
Name: Morgan(Kamome/Kagome)
Email: Lizzie17540@aol.com
City: None of your business,got it!?!?!?!?! State: US,thats all im tellin' ya!
Comments:
This is very cool...even though im new here,i think its sooo cool how y'all did this! (half my family is texan) thats all i gotta say

Date Entered:7/17/2005
Name: Loli
Email: marilolidiazvazquez@yahoo.es
City: Not Entered State: Spain
Comments:
hi, i'm loli i have Rp since a child and it has gotten worse the last five years. i have almost no field and a bit of central vision. for me it's still difficult to cope with rp allthough i've allwaus lived with it, here in Spain it's very hard to get an employment, and if u don't have a job u cant be independent, i think this page is very interesting, i send my e-mail for anyone who would like to write to me, bye.

Date Entered:7/11/2005
Name: nancy
Email: ntran0187@hotmail.com
City: fairfax State: va
Comments:
my husband has rp and i am trying to find out more information on the retinal implants.

Date Entered:7/11/2005
Name: nancy
Email: ntran0187@hotmail.com
City: fairfax State: va
Comments:
No Comment

Date Entered:7/11/2005
Name: Daniel Angue
Email: thos620@hotmail.com
City: Chicago State: IL
Comments:
i-023e8c8a144be7546759fd96344a1525-i Very good work, nice webpage.

Date Entered:7/7/2005
Name: john gallagher
Email: john.gallagher@knightfrank.com
City: Not Entered State: Not Entered
Comments:
I have a colleague at work who has RP. Can anyone direct me to a website that provides info on workplace reccomendations ; types of lighting, decoration etc

Date Entered:7/3/2005
Name: bernice
Email: bernicequintcwl@aol.com
City: brampton State: canada
Comments:
i have rp so does all my family but with gods help we all try to live with what we have and give thanks to god at least we are not in a bed or wheel chair

Date Entered:7/3/2005
Name: mario
Email: brumarypike@aol.com
City: brampton State: canada
Comments:
i have rp since i was 12 years old,iam.ok in daylight but at night or in dark places i cannot see iam. now 36 years my sight is still the same

Date Entered:6/27/2005
Name: Tara Smith
Email: bntasmith@adelphia.net
City: Not Entered State: Virginia
Comments:
RP has been apart of my family for several years. I am 33 and have been teaching school for a year and a half. I was told last week that I have swelling in my retinas. Does anyone ever have this problem, and if so, how often does it occur? My mother had some swelling about a year and a half ago, but I am quite a bit younger and not sure why I am having these problems now. I love teaching and want to continue doing so for a long time, but right now I don't see that happening. If anyone knows about the swelling I would appreciate more info. Thanks. God Bless.

Date Entered:6/27/2005
Name: myrna toney
Email: myrna.toney@verizon.net
City: tampa State: Not Entered
Comments:
No Comment

Date Entered:6/20/2005
Name: TAMMY
Email: TJS@AOL.COM
City: UPSHUR State: TEXAS
Comments:
HI, I AM TAMMY WITH USHER,IT EFFECT MY EYES AND HEARING,I HAVE VERY SMALL TUNNEL VISION NOW AT AGE 49YR AND I AM ALSO ALMOST DEAF VERY HEARING IMPAIRED, A FEW MORE HEALTH PROB ALSO, I LOOK AT IT AS A GIFT FROM GOD THAT HE CHOSE ME TO CARRY THIS OUT AND NOT MY KIDS ARE OTHER LOVE ONE, MABE IT SAVE MANY,I REFUSE TO PITY MYSELF,CHIN UP,

Date Entered:6/20/2005
Name: TAMMY
Email: TJS@AOL.COM
City: UPSHUR State: TEXAS
Comments:
HI, I AM TAMMY WITH USHER,IT EFFECT MY EYES AND HEARING,I HAVE VERY SMALL TUNNEL VISION NOW AT AGE 49YR AND I AM ALSO ALMOST DEAF VERY HEARING IMPAIRED, A FEW MORE HEALTH PROB ALSO, I LOOK AT IT AS A GOFT FROM GOD THAT HE CHOSE ME TO CARRY THIS OUT AND NOT MY KIDS ARE OTHER LOVE ONE, MABE IT SAVE MANY BY HIM CHOSEN ME WITH THIS,

Date Entered:6/3/2005
Name: Prince ifeanyi Ilabor
Email: ifytutu@yahoo.com
City: Luxembourg State: Luxemboru
Comments:
Very nice site

Date Entered:6/3/2005
Name: Payman Vafaie
Email: Payman_vafaie@yahoo.com
City: Tehran State: Iran
Comments:
If there are any break through for RP I would like to know about it.

Date Entered:5/24/2005
Name: prashant
Email: prashant_yg@hotmail.com
City: New Delhi State: India
Comments:
need to know any breaktrough in RP cure

Date Entered:5/15/2005
Name: Mr. Gopal
Email: gopalvashiyar@sancharnet.in
City: Jamnagar State: India
Comments:
HELLO FRNDS. BEFROE FEW WEEK I HAD READ IN THIS SITE ONLY THAT SOMEBODY KNOWS 2 DOCTORS IN MALYSIA WHO CURE THE RP. PLZ GIVE ME MORE INFORMATION IF ANYBODY KNOWS IT.

Date Entered:5/12/2005
Name: THAM
Email: THAM@LINUXMAIL.ORG
City: KUALA LUMPUR State: MALAYSIA
Comments:
Since astaxanthin crosses the retina, I wonder if it may be of any help in RP ?

Date Entered:5/11/2005
Name: Paul
Email: abacae0849238@yahoo.com
City: Not Entered State: Not Entered
Comments:
Thank you for the useful inforamtion. It is so helpful to my family.

Date Entered:5/7/2005
Name: yvonne graham
Email: ygrahamlynn@aol
City: eastkilbride State: scotland
Comments:
my partner was diagnosed with progressive rp when he was 21 and was told he would be blind by the time he is 35, he is now reached 35 and still has some sight left.I have heard of things like beta carotene and eye Q can help delay blindness but no proof of this.has anyone heard of or tried anything else?.

Date Entered:5/7/2005
Name: yvonne graham
Email: Not Entered
City: Not Entered State: Not Entered
Comments:
No Comment

Date Entered:5/4/2005
Name: sara graf
Email: sara_nicole83@yahoo.com.au
City: adelaide State: s.a.
Comments:
this site is very interesting ro me because i am currently doing a school project on rp and some of the information seems useful

Date Entered:5/3/2005
Name: Gopal Vashiyar
Email: gopalvashiyar@sancharnet.in
City: Jamnagar State: India
Comments:
Any one have information regarding new technique innovated by Erinna and Robert from ADVANCE CELL TECHNOLOGY CENTRE IN WORCESTER. I have heard they have found new treatement for RP of transfering STEM CELLS to cure RP. If any one have any information please tell me at gopalvashiyar@sancharnet.in . If you know any doctor practising for the same please also tell me. Hope for reply. With best wishes Gopal

Date Entered:5/3/2005
Name: Gopal Vashiyar
Email: gopalvashiyar@sancharnet.in
City: Jamnagar (Gujarat) State: India
Comments:
Dear frnd. I came to know this site while searching for help for RP. Can any body help me out? Is there any technique there which can cure this RP.? Please also let me know if any body knows about new technique of transfering Stem Cells in ratina.? If any body have contact of any doctor doing this new technique innovated in worcester ? Please do email me gopalvashiyar@sancharnet.in Thanks

Date Entered:5/2/2005
Name: Angelo Ercolamento
Email: aercolam@frontiernet.net
City: rochester State: ny
Comments:
No Comment

Date Entered:5/1/2005
Name: Mr Nash
Email: aisha87a@aol.com
City: Hounslow Middlesex State: U.K.
Comments:
Hi there, i am of 30 years of age with no one in the family with RP apart from me. I would be very much keen to knopw of any new research regarding treatment or if new research being conducted around the world. Plse contact me....

Date Entered:4/28/2005
Name: Stephanie
Email: starlight226@hotmail.com
City: Hartford State: Connecticut
Comments:
My mom was diagnosed with RP when she was 29, and is now 45. She has been legally blind since 1998 and completely blind for the past 2 years. She was on Vitamin A therapy, and is waiting to hear back from Optobionics. For the past 6ish months, she has been listening to Healing Scriptures on CD, and has actually been able to see not only movement, but is able to tell the difference between black and pink. Has anyone else heard of vision coming back?

Date Entered:4/26/2005
Name: Umid Abdurahimov
Email: umid_abdurahimov@netzero.com
City: Brooklyn State: NY
Comments:
I've been diagnosed with RP when I was nine. To a teenager like me life with RP has been like hell. I can't ride bicycles, can't rollerblade,can't play baseball. Having Retinitis Pigmentosa shattered my dream of becomong a baseball player. Sometimes I'm afraid that one day Imight wake up with no vision. Having very limited vision field always had put me in some kind of disadvantage one way or another. But I'm keeping my faith in God, hoping that there'd be a cure which not only will stop but also reverse the RP effect.

Date Entered:4/17/2005
Name: Dr.Shalini Bhatia
Email: himani.s@rediffmail.com
City: chandigarh State: india
Comments:
No Comment

Date Entered:4/11/2005
Name: Jeff Lynch
Email: redoakjeff63@yahoo.com
City: Rocky Mount State: NC
Comments:
I'm 41 and was diagnosed at the age of 25. I still work and drive during the day. I currently have a cataract on each eye and have been seeing a retina specialist who suggests I have them removed to bring my vision back to 20/20. He's got me taking Trental and Diamox until October when he plans to do the surgery. The medication really sucks!!! Would like to hear from anyone else who has been through this surgery and whether or results were satisfactory. Thanks

Date Entered:4/9/2005
Name: JERRY MELCHIONE
Email: GMELCHIONE@AOL.COM
City: NEWTON State: NJ
Comments:
I HAVE RP FOR A NUMBER OF YEARS NOW. I STOPPED NIGHT DRIVING AND WEAR DARK SUN GLASSES IN THE DAY LIGHT HOURS. CLOUDY DAYS ARE GOOD FOR ME. I'M AN ELECTRICAL CONTRACTOR THAT STILL WORKS. ITS A PAIN GETTING AROUND BUT I FORCE MYSELF TO DO IT. THANKS JERRY

Date Entered:3/31/2005
Name: Deb Smith
Email: ismith3@cogeco.ca
City: Fort erie, Ontario State: Canada
Comments:
Great site...new RP diaganosis very helpful Debbie

Date Entered:3/30/2005
Name: Anna
Email: honey84976@hotmail.com
City: Williams lake State: Canada
Comments:
thank you for this very informative web site

Date Entered:3/17/2005
Name: Rose
Email: angely_jc@yahoo.com
City: Kortrijk State: Belgium
Comments:
am also an RP patient, but I dont think about my RP, but think what i can do with it. There is a reason for everything. God has always His purpose, and that is what i am concern about. What is His purpose in my life? I am still so thankful everyday that i can see. I like so much walking in the mall, watching the people, old couples that are still walking holding hands, baby crying, or laughing, people having coffee, and things like that, and i cant avoid the thought of.." oh my, one day, i wont see them anymore"...but then in my heart there is a sweet whisper telling me" my child, you are still the luckiest/blessed of them all, those people are walking around without RP, but they dont know Me, but you know me and experience my love everytime, and you know i will always be with you, and you know what salvation is", then i feel so relaxed and not worried at all...I pray that all of you also will know that having an RP doesnt mean that ur life is over..u still can shine though u cant see...and i hope and pray you see Jesus too as your personal Saviour ! this is the best thing that can happen to your life, and i promise you, u wont be sorry!!!GOD BLESS YOU ALL!!! Jesus loves you!

Date Entered:3/16/2005
Name: James Lynes
Email: inthewoolpack@aol.com
City: Looe, Cornwall State: England
Comments:
I am 17 years of age and my mum found out i had got RP when i was 2 years old. My mum also has this condition and she has 4% left of vision til she goes blind. She does have a guide dog to help her. I would be very interested if people wanted to email me

Date Entered:3/13/2005
Name: Lisa Neece
Email: 94.neece@sbcglobal.net
City: western part of state State: OK
Comments:
I am recently diag. with RP I have a brother with it for the past 10 yrs, I did some research then but was surprised how much more it out there now. I came across something I found interesting...just search by key words like refsum and phytanic acid. I have severe dry skin that when I scratch it weeps clear liquid. I have had it for about a year. It started about a month after I started taking diovan 80 blood pressure medication for mild BP problems. I have gone through 3 doctors about the rash and numerous diagnosis and I don't even remember all the treatments for it...none of which made it go away. As soon as I found this info 3 weeks ago. I cut out all dairy products and all meat except chicken, fish. My skin was as clear as it had been in the past year. I was diag. with RP five days ago Mon. I requested my phytanic acid level to be tested and I am waiting on the results. I started taking the vit. A and fish oil on wed. my skin has started breaking out again. Not sure at this point. A lot of the info. on this is so scientific that it is over my head. I read what I can understand and look up what I do not. i have a BA in art....so this is not really up my alley. However, since I have yet to find a doctor or many web sites with this info in "common" terms I continue to look into it myself...stick to University sites. It really makes me mad that there is not anything out there...I think if my brother had changed his diet then he might not have experienced such a rapid loss of his vision. I found documentation on this from 1975!!! I am married and have 2 boys. I pray they do not have it. I have 3 brothers....as I stated earlier one has had it 10 yrs. I have also discovered another has symptoms. Happy researching. God bless all. Lisa

Date Entered:3/10/2005
Name: Angela Fiscella
Email: angiethrock@hotmail.com
City: Ittumwa State: Iowa
Comments:
I am 36 years old and I have RP. I am hoping to meet people who can relate to some of the challenges that I deal with daily. I haven't met too many people that have even heard of RP, so it will be nice to be able to discuss the way it challenges us to make changes in our lives.

Date Entered:2/28/2005
Name: jerome
Email: jart5623681@yahoo.com
City: pacifica State: ca
Comments:
Hi! im 22 yrs old and was diagnosed with retinititis pigmentosa 3 yrs ago. since then i've been searching the internet for somekind of cure or treatment. it's really hard to cope with this. it's so sad to know that in a few years i could loose my sight. i just wish that they find a cure for all of us.. god bless us all..

Date Entered:2/27/2005
Name: Mr Harnek Singh Chera
Email: harnek@chera.wanadoo.co.uk
City: Coventry State: UK
Comments:
My 2 year old son has been diagnosed with RP (rod-cone dystrophy). I wish I could take his place everyday.

Date Entered:2/21/2005
Name: Steven Elief
Email: stevenelief@aol.com
City: Edinburgh, State: Great Britain
Comments:
This is a very informative web-site. I found out today that I had R.P. Regards, S Elief

Date Entered:2/18/2005
Name: Robert Martin Jr
Email: RMmartin2u@aol.com
City: St.Louis State: Mo.
Comments:
I'm 47.born hard of hearing of 55DB loss..vision of color blindness..yellow and white as a kid..now dark blue.black..sometime when red blend in with orange to broun. now having 4-5 degrees of vision..20/30 to 20/40 reading vision...hearing is 70 to 80DB..aids help bring it down to 60db to 70 DB. age nineteen hearing i'm going blind...truly cruash me..was hoping to go into dirt racing. wasted nearly 20 years in depression..so YOU all make a decision..LIVE LIFE. NOW that I have FOUND JESUS..oh.man things are different.i got healing for my knees.they were truly painful..now totally FREE of pain and drugs.so now pursuing wisdom about healing..and healing works by SPEAKING of HAVING healing before it really is there..and this fit..with what I had said..age nineteen...i said..I may go deaf..but i will NEVEREVER GO BLIND! that was spoken deep in my heart..for we are spiritual being..and humanly do have FAITH that moves mountain(mk.11:23). and I tell you..as an equal to you..better days are coming..for GOD does loves us..and JESUS death and resurrection is OUR CURE...IN THIS LIFE..we shall be used by GOD. as a LIGHT in the DARK WORLD of their wicked ways..sins..ect. as a minister of GOD..in power..in truth..and in LOVE.put your FAITH in JESUS..pursue him..dig up truth about HEALING that is ALREADY YOURS..it set before us on a table sort of saying..and we have to reach out..by FAITH..to recieve it..and GOD who is SPIRIT and LOVE.and JESUS is TRUTH..and the Holy Spriit is POWER so the mixture of all of this..IN US..bring forth our HEALING. I had an issue of 'not worthy of his lOVE" but learned..HE send His SOn..as a sign that we are WORTHY of His LOVE..to be delivered from condemnation of sins..as well the curse of deafness blindness and whatever else..afflicting us...if there is a GOOD GOD there also a BAD God. who desire us NOT getting healed. for if YOU were healed..how many others will seek GOD? a bunch of people right?? write me..if so desire. I expect to drive that new 2005/6 mustang..just as my last car was a 1965 mustang convertible. GOD is MOVED by OUR FAITH in HIm..not our complaint..he is moved by our HONOR to Him. VICTORY is ALREADY DONE..by the blood of JESUS on that cross..delivering all of us..from blindness and deafness and so on...it is truly FINISH. we jsut have to believe without seeing it..but we shall hear of good reports of folks being healed..so seek men/women of GOD.who does the work of miracles and healing..GOD is doing a NEW THING..in these days. your friend robert.who is a friend of God.

Date Entered:02/05/2005
Name: Julie Maschhoff
Email: jamasch@ilstu.edu
City: Bloomington State: IL
Comments:
Greetings, I'm a 55 y/o with Usher's (about 10% central vision left) and I use a white cane. My cane is absolutely liberating...I can go anywhere. I am working on a doctorate degree in education and teach full time at Illinois State University. All WE have to do is learn to do things differently!!! Peace and love, Julie

Date Entered:02/01/2005
Name: Ron Honzay
Email: honzay@tds.net
City: Olivia State: Mn
Comments:
I have Usher Syndrome 2. I find out I can no longer drive, That is tough cause, we live in rural about 9 miles from town, I am kind of stuck here unless I bother neighbors & friends to drive me, while my wife works full time to meet end

Date Entered:01/31/2005
Name: Nan Borton
Email: nborton@shorenet.net
City: Cambridge State: MD, USA
Comments:
No Comment

Date Entered:01/30/2005
Name: sandra braddick
Email: chloexsandy@aol.com
City: shrewsbury State: uk
Comments:
No Comment

Date Entered:01/20/2005
Name: Hannah Gibson
Email: kim.white@mercedes.co.uk
City: Hemel Hempstead State: England
Comments:
Thank you for creating this web site. I have found your report on Vitiman A very exciting and will be looking into this further.

Date Entered:01/17/2005
Name: dede
Email: Not Entered
City: Not Entered State: Not Entered
Comments:
No Comment

Date Entered:01/11/2005
Name: Rose
Email: silkredrose_mj@yahoo.com
City: Not Entered State: Belgium
Comments:
To all of you...i feel so sorry that we have RP, but guys, this doesnt mean that our life is over then! when we get blind, we cant do everything we used to, but we will still be able to do many things. whatever you do, dont lose hope...God is with us...keep the faith. He loves you...

Date Entered:01/10/2005
Name: senthilkumar.N
Email: senthil_ns@rediffmail.com
City: Vellore, State: TN, India
Comments:
Iam 37 years old. I have RP. diganoised at the age of 34. Iam baically civil engineer. Now iam doing software business and also doing civil consultancy. but nowadays iam not able to walk without any assistant. Now iam simply sitting in my house. My wife is afraid to send me outside without assistant. she is only earning person in my house. because iam totally sitting one place. so iam totally depressed. today only i have seen this sight. could you help me? iam not able to continue. please help me to see the world until my death. is there any treatment for this? please guide me on this regard. iwill greatful to u. any information/treatment please send mail at any time now the time in india is 00.40

Date Entered:01/05/2005
Name: Rose
Email: silkredrose_mj@yahoo.com
City: Not Entered State: Belgium
Comments:
Hi everyone, I am Rose from Belgium. I am a filipina married to a Belgian. I was diagnosed with RP 6 years ago, but night blind since birth. I just went to a Doctor today after moer than 3 years. I told him that i dont have history of RP in the family, and night blind since birth, so he said he will make some blood test and electronic test to know if what i have is really RP. Anyway, i think its really RP, and i dont hope that much its not. Whatever, i trust God on this. I just put everything in His hands, and not worry at all. Every morning i wake up, i am so thankful to God that I still can see, and that i had a chance to see...We all dont know what this year or the years ahead will bring, but its just such a comfort to me that maybe one day my sight will get smaller and smaller, or even all black, but i know i will always be a Red Rose in His hands! I know its not easy, this is such a big storm for us, but God is bigger than our storm, just walk and continue trusting Him, and even though it will be dark, its so nice to know, we wont be alone...He will be there as our guiding Light...God bless you all!!!!

Date Entered:01/05/2005
Name: James Leong
Email: Not Entered
City: Tutong State: Brunei
Comments:
I was diagnos RP recently at the age of 53 although there was systom 10years ago but only recently get worse as I bump into furnitures in daylight and having difficulty to adjust to dark places ( about 5 minutes ) I wonder would the limit of use of the eyes say for 6 months would let the cone or rod cells repair or regenerate by themselves. Glad anyone give me an answer.

Date Entered:12/20/2004
Name: Betty Banks
Email: BDUMMETTE@aol.com
City: Brooklyn Newyork State: Kings
Comments:
Hello everyone, I hav been living with R/P and ushers for many years and now I am ready to share my story.

Date Entered:12/18/2004
Name: SALLY GRAY
Email: blazergray00@aol.com
City: LANCASTER State: KY/USA
Comments:
I HAVE A 18 YEAR OLD SON WITH R.P./ IF THERE IS ANOTHER PARENT OUT THERE/ WE NEED EACH OTHERS SUPPORT. THANK YOU AND MAY THE LORD BLESS YOU.

Date Entered:12/18/2004
Name: gracia
Email: hottydado_921@hotmail.com
City: beirut State: lebanon
Comments:
u're site is gr8

Date Entered:12/04/2004
Name: Alvaro
Email: luckyguy135@hotmail.com
City: Bogota State: Colombia
Comments:
John is a wonderful person, the website just the best tool for me who has RP to find all to be up to date on this disease. Thanks John.

Date Entered:11/21/2004
Name: Bob MacDonald
Email: bobwmacdonald@gmail.com
City: NS State: Canada
Comments:
38 y/o male with RP. I was diagnosed in Dec 98 and have deteroriated since. My visual field is about 30 degree. Some days are harder than others but I try to keep a good attitude, thing could be worse RP is bad but it is not life threatening. So keep the faith and pray someday there will be a cure. Bob

Date Entered:11/10/2004
Name: Larry
Email: thm5ti@aol.com
City: Tucson State: AZ.
Comments:
No Comment

Date Entered:11/10/2004
Name: Mariana
Email: marianaperez@hotmail.com
City: Not Entered State: Not Entered
Comments:
Good site. Nice!

Date Entered:11/09/2004
Name: Louise Mana
Email: babesoliz@hotmail.com
City: milpitas State: ca
Comments:
my husband has this disorder and is in prison how can I get him some help and info?

Date Entered:11/04/2004
Name: penny davis
Email: micahd@xtn.net
City: surgoinsville State: tennessee
Comments:
Hi my son is 16 now we found out when he was 5 he has RP I have always said i can deal with this age when time comes he wants to drive so bad like the rest of his freinds and maybe he might pass the vision test i dont know but the thought of it scares me to death please if theres anyone out there with any advice i would greatly appriciated

Date Entered:11/02/2004
Name: Kelly Vankoughnett
Email: kelly.vankoughnett@sympatico.ca
City: st.thomas State: canada
Comments:
i am 19 yrs old and i have retinitis pigmentosa i am just trying to find out if anyone is trying to work out a cure and if they are coming close

Date Entered:10/27/2004
Name: Sarah Ott
Email: sro353s@smsu.edu
City: Springfield State: MO
Comments:
I have Usher's type two. If there is anyone that has Usher's I would love to hear from you. I would like to know where your visual feild is and if you are employed, how is it affecting your work life. thank you!

Date Entered:10/12/2004
Name: Chelsea D.
Email: mjr_qt_4u@yahoo.com
City: Phoenix, AZ State: USA
Comments:
Hi. I have a really good friend who has rp. He was wondering if smoke can increase the blindness because he is always around it and his mother said it would. But we just want to double check. And i was also wondering if researchers one have one more step to cure the disease because my friends brother had told us both that. if you know anything about any of these questions i would greatly appreciate an e-mail. thank you

Date Entered:10/10/2004
Name: snehal shah
Email: snehalas2000@yahoo.com
City: mahesana State: gujarat india
Comments:
i have suffering from RP since last 20 years i have some problem in night i have not drive vehcial at night please give some imformation about further research thanks snehal shah

Date Entered:10/06/2004
Name: carol
Email: chuebner@nctimes.net
City: carlsbad State: CA,usa
Comments:
I had rp since I was kid now 39 years old I had catract surgery done both eye I can see clear from a distance but still have rp and blind spots I would like to have a dog in my life but guide dog can't have not blind just tunnel vision. If anyone know How a person with rp can get a dog email me or just to talk to.Every body with rp don't give up hang in there Maybe there is a reason why we have rp. carol

Date Entered:10/05/2004
Name: Karen
Email: siennahound@bresnan.net
City: Fruita State: Colorado
Comments:
I have a daughter who is 6 years old, she was just diagnosted with nightblindness, she has to go back in 6 months for more test to see if she is getting RP.

Date Entered:10/01/2004
Name: Tammy McCollough
Email: connell2@frontiernet.net
City: Monroeville State: Alabama
Comments:
Hi, I'm 32 y/o. I've been hearing impaired since I were 5 and never know what causes my hearing loss. All I knew it were nerves dead. I'm still wearing 2 hearing aids. Then this year of March find out I had RP. I noticed my eyes changing since 3 yrs or so. Didn't know what it going on when my eye dr think it the RP and done some researching and read about it and think that what I had. Now I know. I had been hard for me, esp not see good. I had been data entry for over 11 yrs and I'm keep making mistake at work and afraid I am going to lose the job. I alway were good at it 11 yrs ago but now I'm not. I tries to be careful and tries not to making an mistake but it hard. I know I ain't only one here and all know understand what I am going thru but the people I work with, they don't. Thinking it all in my head.. Anyway, thank JWEN to making this website it had been really helpful here.

Date Entered:09/22/2004
Name: Janet
Email: spacy04@aol.com
City: North Attleboro State: MA
Comments:
Very informative web page! It is an excellent resource, and addresses anything you'd want to know about RP and retinal degeneration. Thanks for all the time and effort you put into this site.

Date Entered:09/21/2004
Name: Alina
Email: elvy@rdslink.ro
City: Oradeaa State: Romania
Comments:
Hi, It's a very useful sight weldone.

Date Entered:09/15/2004
Name: shelby kelly
Email: Not Entered
City: Not Entered State: Not Entered
Comments:
No Comment

Date Entered:09/13/2004
Name: wale
Email: wale@wale.com
City: Not Entered State: togo
Comments:
i don come again

Date Entered:09/07/2004
Name: ankit
Email: ankit_jain284@yahoo.com
City: indore State: india
Comments:
My mother has RP and she has lost her almost vision. i live in india so anybody can tell me about silicon chips or artificial retina? where we can get transplant? is this restore the eye sight? pl help me and mail me at any time i am very upsets thanks

Date Entered:08/29/2004
Name: Willie Belle Rautenberg
Email: hapaway@comcast.net
City: Sarasota State: Florida 34235
Comments:
I am 81 and just found out I had 2 Paternal uncles who were Albinos, Have a 56 yr. old nphew whi is one, too I believe. My concern is my Grandson who at 2 1/2 was diganosed with Retinitis Pigmentosa and is leally blind. He can't drive, see across the street or many othe things. He is color blind and is 24, and not employable it seems. What help can he receive? he looks as if he's eeing but wears contacts becasue glasses are so strange looking and don't imorove his vision.Hid Mother and I feel so helpless and I fell gulit because I realize it's from my side of the family. I's appreciate any litereature or advise PLEASE!!

Date Entered:08/28/2004
Name: nici
Email: panda6668@web.de
City: germany State: g
Comments:
hello from Germany You have a verry nice page

Date Entered:08/13/2004
Name: randole
Email: randoleshy@aol.com
City: moberly State: mo.
Comments:
No Comment

Date Entered:08/13/2004
Name: ALONZO JOSHUA
Email: myprivate@myself.com
City: IRANIAN State: IRAN
Comments:
I WAS DIAGNOSED OF CANCER OF LUNG IN '2003. I AM 72 YEARS OLD. I AM STILL LEARNING HOW TO "LIVE WITH" CANCER EVERYDAY "THINGS" IT IS VERY HARD THOUGH. I HAVE COME ALONG WAY IN DEALING WITH IT. NEEDLESS TO SAY, I AM NOT THRILLED ABOUT HAVING BP. BUT I HAVE COME A LONG WAY IN ACCEPTING IT. I WOULD LIKE TO TALK TO OTHERS IN MY AGE GROUP. ALONZO B.JOSUA

Date Entered:08/04/2004
Name: eddie godsey
Email: godsey52@classic.net
City: osceola State: arkansas
Comments:
No Comment

Date Entered:08/03/2004
Name: Chris Keary
Email: kearyonline@hotmail.com
City: Leigh / Lancashire State: England
Comments:
I am 22 and was diagnosed with RP at the age of 7.It was only last year i realised the seriousness of RP, and that i could actually loose my sight in years to come.At first i found it hard to come to terms with, and did not want to beleive what i was being told. But as time has gone on i have learned to deal with my condition,and thanks to GREAT web sites like this one i can find out information about RP, and only hope like the rest of the people world that have RP,a cure is not far away.

Date Entered:07/22/2004
Name: jean arnold estrada hidalgo
Email: jeansc13@hotmail.com
City: peru State: talara
Comments:
soy de peru talara y tengo 21 aos y suflo de retinitis pigmentosa cuando tenia 12 y necesito ayuda e informacion gracias

Date Entered:07/19/2004
Name: Robert Beshears
Email: Not Entered
City: Portland State: OR
Comments:
I have RP and am looking to volunteer my time. If anybody has any suggestions my address is: 2318 NE MLK, PDX, OR 97212; or 503-335-8611

Date Entered:07/15/2004
Name: MICKI LONGUM
Email: micki@online.no
City: OSLO State: NORWAY
Comments:
Just over 70 and diagnosed almost by chance, three years ago. Paint, and in some strange way, don't wish to lose the sight impairment of having my blind spots because it gives me unexpected and interesting perspectives when painting.

Date Entered:07/11/2004
Name: TRACY CARROLL
Email: MARYCARROLL8@AOL.COM
City: NORTH AUGUSTA State: S.C
Comments:
I'VE HAD R.P ALL MY LIFE I'M NOW 23.IT'S VERY HARD 2 DEAL WITH AND PEOPLE DON'T UNDERSTAND IT'S HARD ON ME AND MY FAMILY MY MOTHER MOST OF ALL,AND EVERYTIME I GIVE UP HOPE SHE'S THERE 2 GET ME THOUGH IT, I WANT 2 THANK HER BECAUSE WITHOUT HER I COULDN'T GOTTEN THIS FARR.

Date Entered:07/03/2004
Name: Jason Cheng
Email: jcheng71@hotmail.com
City: Onalaska State: Wisconsin
Comments:
I've just recently been diagnosed with RP, though suspected it for over 5 years ever since my aunt announced that she had it and I could relate to her symptoms. Right now I can still see quite well other than the night blindness and local loss of peripheral vision. My wife has been extremely supportive and has learned to tell me where things are when I drop them, or never put a wine glass next to me without warning me about it, for example. I'm just hoping like everyone else that in my lifetime there will be a treatment, and that either I have not passed it on to my children or at least they're only carriers and not personally affected by it.

Date Entered:06/19/2004
Name: Paul Heslop
Email: paul@heslop67.freeserve.co.uk
City: Keswick, Cumbria State: England
Comments:
I am writing a biography about a man, aged 63 years, who has retinitis pigmentosa. His eyesight deteriorated rapidly when he was about twenty years of age. He is totally blind, yet I read that, "It is unusual for people with RP to become totally blind, as most retain some useful vision well into old age". Despite his condition and family background, my subject went on to succeed in business, being positive and determined. Part of his work, years ago, was to assemble electric motor parts for hair driers, and repair brakes and other parts of articulated lorries, a considerable feat for someone who cannot see. Is it possible that he retains some peripheral sight, however slight? It would seem not, if some of the 'tests' his family and friends have played out on him over the years. This has happened because some of the things he does seem to bely the fact that he is totally blind. My own observations are that he cannot see a thing. But having regard to the above - 'unusual for people to become totally blind' - I wonder if there is some vision, even if he may not realise it himself. I am a lay person. Any qualified advice, not on the website, would be appreciated. Paul Heslop 19 June 2004 Keswick

Date Entered:06/17/2004
Name: Anders Ek
Email: anders.63@comhem.se
City: Visby State: Sweden
Comments:
AMARJEET SINGH about your son and Viatmin A in large doses can damage other parts in his body like the kidney, so if he use Viatmin A in large doses be aware of that, it can damage real bad because the doses are up to 5 times higher than normally if it going to work on RP at all, so talk to a good doctor about it first and use Viatmin A carefully on kids. I have RP myself and i dont eat any Viatmin A at all becase my kidney is damaged, but i help some people so try it but talk to a doctor first Regards from Sweden

Date Entered:06/08/2004
Name: AMARJEET SINGH
Email: amarjeet100@vsnl/net
City: New Delhi State: India
Comments:
Recently, my son Hartaj(9yers) has been diagnosed with RP. Please inform which is correct medicine to give him Viatmin A, so that his vision can be controlled and avoid further deteriation

Date Entered:06/06/2004
Name: Jan Farrar
Email: jandon@humboldt1.com
City: Arcata State: Calif., USA
Comments:
Thanks again John. I have been here before. It is so nice to see so many people wanting to find a cure. I have taken the vitamin a with palmate and believe it helped me not to get worse. Everyone needs to talk to a doctor. Also for those of you who need to communicate with other rp sufferers there is a rp friends at yahoo and they are a helpful and fun bunch. Also if Tina Nort sees this I need for you to Email me again, I miss your emails. Jan

Date Entered:05/23/2004
Name: zvonko ranogajec
Email: zranogajec@peoplepc.com
City: evanston State: ill cook
Comments:
I have two cousins in Croatia who suffer from Rp. They are in their sixties and have less than 1% of their central vision left.Would Lutein help them even a slight bit.I am trying to help them in any way I can from the human standpoint.thank you. Of course I am limited in financial resources and knowledge and the distance is a handicap in my desire to help them with information. Thank you for letting me join the guest book eventhough I dont know what exactly it is.Please reply if that is the intent of the guestbook. Again thank you and God bless.

Date Entered:05/17/2004
Name: Debbie Getson
Email: jrgdlg@centurytel.net
City: williford State: arkansas
Comments:
I've got rp,any one here from arkansas?does any one know about the vit.A treatment?my doctor said i need to start on it.thank you debbie

Date Entered:05/12/2004
Name: Chuck Riggs
Email: csriggs@easystreet.com
City: Portland State: Oregon
Comments:
I am a little confused about some of the things I seem to be seeing, or think I am seeing.

Date Entered:05/11/2004
Name: DAVID SHANE
Email: DPCESHANE@AOL.COM
City: FORT WAYNE State: INDIANA
Comments:
ANY INFO ON OUR DISEASE IS IS APPRECIATED THANK YOU FOR YOURS

Date Entered:05/03/2004
Name: daxy shah
Email: sndshah@yahoo.co.uk
City: nadiad State: gujarat /india
Comments:
awaiting for better prospect in future life.God has given thih gift [R.P.]to some one special like you and me.

Date Entered:05/01/2004
Name: Wesley Glebe
Email: wesley.glebe@mail.mcgill.ca
City: Edmonton - Summer Montreal - Rest of the year State: Canada
Comments:
Hello All I am 27 years old I was officially diagnosed with RP as a teenager though it was only a formality by that point Years of declining vision and a family history meant that no one was surprised by the diagnosis. Reading though the entices here I noticed that a lot of people seemed to be looking to interact more with other suffers of RP, either for emotional support, information exchange or social reasons I was wondering therefore if anyone would be interested in helping to set up a mailing list, web board or chat room. It is easiest to start with a mailing list. If anyone out there is iterated E-mail me. Cheers Wes

Date Entered:04/24/2004
Name: Jennifer Bates
Email: dijnjc@aol.com
City: Dersingham State: UK
Comments:
I was diagnosed with RP atthe age of 15, iam now 25, i lost my drving license when i was 21, i hate not being normal i feel my word has caved in and after 10 years i still can not get used to the idea that one day i will not see anymore.

Date Entered:04/24/2004
Name: Jennifer Bates
Email: dijnjc@aol.com
City: Dersingham State: UK
Comments:
I found the website very infomative as a suferer of RP it nice too see that i am not the only with this condtion.

Date Entered:04/16/2004
Name: Abhijit Jawale
Email: abhi555@yahoo.com
City: Pune State: maharashtra
Comments:
Great info. -Abhijit Jawale

Date Entered:04/15/2004
Name: Faisal Z
Email: Not Entered
City: Amman State: Jordan
Comments:
RP is the way to haven if you believe in God, I have RP and I hate it but I trust in God.

Date Entered:03/31/2004
Name: DIANE E. SPURR
Email: Not Entered
City: PALM BEACH State: FL.
Comments:
BORN WITH A 60% HEARING LOSS WHICH IS PROGRESIVE AT AGE 60YEARS I NOW FIND OUT I HAVE RP.

Date Entered:03/31/2004
Name: Frank
Email: Not Entered
City: Las Vegas State: NV
Comments:
I have had RP all of my life I am 24. I think it is a horrible disease that has effected my entire family. My mother, sister, grandmother, aunts, uncles, and cousins. I am scared that someday my children are going to have this same disease. PLEASE I beg them to find a cure, so that nobody has to deal with this horrible disease. It is like somebody else wrote. They can come up with dvd's for our car and cameras on our cell phones. However they havent come up with the most important thing of all the cure for our disease. I hope all of you continue to pray and hope that someday we will be saved.....take care Frank

Date Entered:03/08/2004
Name: N Emre
Email: msnureld@tms.huji.ac.il
City: Jerusalem State: Israel
Comments:
High everyone! I would be grateful to anyone provide me with his experience about the healing system used by Dr. Grace Halloran as it is explained on her web; visualhealing.com . It seems that there is something interesting concerning healing and improving retinal damages and diseases . Please send me information about such possibilities if some of you tried the integreted visual healing of Dr Grace and D. Miller using the microStim device.

Date Entered:02/25/2004
Name: Iris Weibel
Email: irisplce@telus.net
City: Edmonton State: Canada
Comments:
No Comment

Date Entered:02/25/2004
Name: Brendan TURNER
Email: bturner@fullfilnet.com
City: Nice State: France
Comments:
I am 35 years old and suffer from retinitis pigmentosa along with my 2 brothers and sisters. I know how difficult it can be as we get older and the condition deteriorates. However, I often tell myself that as long as I am healthy in general I still have the chance to live and enjoy life without feeling different from the rest. I have also fortunately found that if we explain to people the exact nature of the condition, no matter what the situation, they are more prepared to understand. I do not wish to say that life is always rosy and I understand the despair which we can often experience. However, we must remember that we can give and receive as much happiness as anybody else.

Date Entered:02/21/2004
Name: Alberto Traveria
Email: cir@mailsuarez.com.ar
City: Coronel Suarez State: Argentina
Comments:
Hello,Im a RP patient from Argentina that wants to know more about. Im 42 years old . Is there any treatment or new operation? Please contact me. Thank you very much Alberto

Date Entered:02/17/2004
Name: Kerry Gordon
Email: gordonglass@xtra.co.nz
City: Te Puke State: New Zealand
Comments:
Hi, I have the disease called Fundus Albino Puctata, the chances of me getting it according to the speacilist that finally diagnosed me were, 13,000,000 to 1. Less odds than winning the lottery, I like walking and can't cope too well with gradual slopes, dappled light, bright light, darkness, coming into or out of either element. hate grey days because everything seems grey, can't find the pointer of the mouse control for ages, people stand behind me saying there it is there it is, i hate that people don't understand that my glasses only help the normal bad vision and don't help the disease effects. I have lots and lots of white spots on the retina. sometimes I can see a coin when I drop it and sometimes I can't. sometimes I can see a bird or plane in the sky and sometimes I can't when I find the missing thing I can then focus on it. My colours are not as good as they should be, but I don't know any better so what the heck, thats the least of my worries right. I have had it all my life but wasn't diagnosed until I was 23. My sister has it too, my brothers and other sister don't. my children don't. It does have a common name but I forgot to write it down, its the name of the man who was first diagnosed with it. He unfortunatly died at 46 or so and so they are not really sure of the rate of deteriotation I should expect. Australan scientists are working very hard in curing a lot of eye diseases, we heard about a possible cure recently and rang the specialist, but he said no, buggar.

Date Entered:02/15/2004
Name: Pam
Email: pamelakay_2000@yahoo.com
City: Selma State: CA
Comments:
Hi everyone, I have had RP my whole life and am tring to stay independet as much as possiable. I have found the man of my dreams and am planning on getting married in July. I would love to talk to othere\s that are having a hard time with RP. Thanks Pam

Date Entered:02/02/2004
Name: cheryl S.
Email: csolberg@nkesc.org
City: Levant, KS State: kansas
Comments:
my daughter has RP and is an artist. We would like to find someone else who is also going blind and is an artist.

Date Entered:01/27/2004
Name: Emil
Email: emil.watralov@motorla.com
City: Not Entered State: Not Entered
Comments:
No Comment

Date Entered:01/24/2004
Name: Sara
Email: shayprt@aol.com
City: Buffalo, State: New York
Comments:
I feel so alone with this, I have two kids who don't have usher like me. I have three brothers and one sister and two of my brothers have usher like me and none of us talk to each other, because of all the problem we had in the past. Noone to share this with. That is a terrible feeling. My mother is the only one listening, and she way over in Louisiana. I'm the only one talking to her out of all of us. I'm at the last stage of going blind and it really tough, espcially when you been independent all your life and now, you have to have some sighted assisted for certain thing, that something hard to get use to and I hate it! I tried talking to my kids but it like talking to a walls(lol) I don't think I can ever get over this, not able to see people faces or tv or anything. I guess it one of those things you have to get use to huh? It seem blind people do have some boring life, not able to see anything, and can't go place or do things when you want to, we blind people have to wait for assisted for pay extra for whatever, like cab, paratransit, even pay to go grocery shopping. How the heck do blind people enjoy life without sight?

Date Entered:01/24/2004
Name: YVONE
Email: JAMINE1030@MSN.COM
City: HOLLYWOOD State: FLORIDA
Comments:
I have a blind brother. His name is Ernesto Aguilar,and he has RP.I apreciate everithing you can let me know about this disease and the resourses and developes about it. Thanks and God bless you. Yvone

Date Entered:01/24/2004
Name: Adrian Mrdeza
Email: adrian_mrdeza@hotmail.com
City: Victoria BC State: Canada
Comments:
I am so glad that someone has made such a concise webpage about such a profoundly important topic that unfortunately plagues too many people. It is phenomenal to see how many people are actually living a part of their lives similar to how I do. It is a small community that we make up -- one that in which we all need to accept that we are there for each other when our beloved friends and family (non-RP'ers) cannot relate to the difficulties that must be overcome. Thank you for opening my eyes to how this disease vastly affects numerous people worldwide, including myself, and providing exceptional information that has the ability to keep people motivated and knowledgable. Cheers, Adrian

Date Entered:01/22/2004
Name: cass hahn
Email: cass hahn@earthlink.net
City: Cape Coral State: Florida
Comments:
I was diagnosed with rp at the age of 56 one cold winter day at the Wills Hospital in Philadelphia. I prayed all the way over that the diagnosis would be a condition that could be "fixed". It was not. I still see but each day is a challenge as more difficulty develops. It is a hard condition in that it is difficult to explain to those who do not have it what I see and what I do not see. They do not understand that glare is just as difficult to deal with as darkness. They do not underdstand that a mourning process is taking place and that I often grieve the loss of my vision the way one would grieve for a family member who has passed away. I found the Lord early in my life and I am one of the fortunate ones in that I can cast my anxieties, fears, tears, losses to him and in return, he provides me with grace and courage to face the day and the future. He continues to be my rock, my fortress, my strength as I live my life to the best of my ability each and every day. I am one of those people who believe that our future is promising. I believe that the researchers are working hard in four different areas to find treatments and cures. I believe that treatment is a "prayer away" and we must ask the Lord each day of our lives for healing. The children with rp have the greatest chance for treatment and how comforting a thought is that? We too, in the future will be helped. In the bible the word "wait" is mentioned so many times. We must "wait" for the time when the newspaper headling will read, " a cure for blindness has been discovered" and we will only have to wait our turn for treatment. In the meanwhile, let us enjoy the blessings the Lord has bestowed upon us. The love of our families, the ability with technology to learn, the fragrance of a delicious meal cooking in the kitchen, the ability to listen to a beautiful piece of music, the gentleness of a loving touch, the great feeling we get when we have succeeded at something that we did not think that we could do. Our lives are filled with blessings. We only have to seek the lord to find them. God bless you all.

Date Entered:01/18/2004
Name: linda jock
Email: cll2141@comcast.net
City: chester, pennsylvania State: pennsylvania
Comments:
No Comment

Date Entered:01/15/2004
Name: Jennifer Otis
Email: L0veit3@sbcglobal.net
City: Kenosha State: WI
Comments:
Hey my best friends mother has RP. I have been around many people with it. They have all had it for as long as i can remember but they still amaze me even today. Their hearing is outstanding and they always know what is going on. it is almost like they can see. four out of the five kids in there family have it. they are very strong people if that ever happened to me i would have died. im proud of them. they helped me see that every thing in this world can happen even to the best people.

Date Entered:01/13/2004
Name: terri wisdom-faulk
Email: myscmone@aol.com
City: covina State: ca
Comments:
I've known since i was 21 that i had this dreadful disease,and the not so pleasent outcome.all the planning for the future does"st really prepare you for what you eventually have to face.all the precautions you take and the financial expense had only given me 6 more years.and that is better than most,so i am thankful for that.i know others have it worse than i,but still it does'nt make it any better,as i would not wish this on anyone. i know at some point there will be a cure but i don't expect to see it in my life time.as of yesterday my peripheral vision is less than 20 percent in both eyes.i know there must be others out there that have done everything as i have to slow down there progression.i tink the worst thing is having to depend on others,when you have been so independent.is there a support group? sincerely terri wisdom-faulk

Date Entered:01/13/2004
Name: Ann Warren
Email: mintmom2jrs@aol.com
City: Lawrenceville State: GA
Comments:
Hi, I'm 44 and deaf mother using ASL of 2 kids, I found out that I have RP since I was 18. I am not too happy when I found out that I have disease. It has slowly down of my vision problem and I take Vitamin A to keep my eyes function seeing better than getting worse maybe it will last 20 more years, I hope. I still drive with no problems but cant stand difficult seeing reflection raining during nights. I am hoping that the cure will treat my disease to see better than suffering and frustrated. Hope to meet deaf with RP and go to national conference.

Date Entered:01/05/2004
Name: Sara
Email: shayprt@aol.com
City: Buffalo State: New York
Comments:
Hi, I'm 43 and found about my rp at 15, but knew something was wrong before that, that it was in my head(lol). I have usher's syndrome type 2. I'm also hearing impaired and hear well with my hearing aids, This rp really sux, have to keep adjusting over and over. I'm at the last stage of going blind, I have 20/70, 20/80 with two degree left and everything if really blurring or fuzzy, I now can't focus any more but still can see very little, so I'm just taking it one day at a time and try to do things different in better living, I'm learning braille and will be getting a new guide dog soon. I'm using my cane now, and just retired my last dog. You gotta make the best of it, that pretty much all you could do. right? SaraSmile :)

Date Entered:01/05/2004
Name: Sean
Email: itchynscratchy71@yahoo.com
City: San Francisco Bay Area State: Ca
Comments:
Wel, folks ... it has been nearly four years since I have written the following message on this board: Well, i have had night blindness since i was a kid. Then i was diagnosed with RP two years ago in 1998. It's been cool, but I think my vision has worsened somewhat in the past several months. I am dismayed that there is absolutely nothing in this world that can help us with our RP disease. But, of course ... the braniacs can stuff a TV in a minivan or come up with a DVD player for "better clarity." Dammit! I want better clarity for my eyes, folks! Why do we ooh and aah about these useless toys and gadgets when our very own Superman is still stuck in a wheelchair? Please don't insult me by saying that these things are not possible. If we can clone a few farm animals for Farmer Bob's sicko nephew, then we can certainly make a few thousands of eyes for retinal eye transplants. Or the microchip implants ... man, with all the technology out there, certainly a few whiz kids can create something for us. You know what it is? Little or no funding. Most of the $$$ comes from the usual budgeted allottment to our universities and research labs. No more ...Please, do what you can.If I become "legally blind" then I will choose my own destiny, not one that God has intended for me. Since then I have struggled with this demon called "RP." But I tried to be more optimistic about it. I got married and started a new life. Things are going great and all that. But every single day I am reminded of what I cannot do. It's hard, everyone, to hang on to the youthful zest of life when my eyes have already retired and been put to the pastures. But still, I try. I have now accepted the fact that I will probably need to tap into community resources to help us find affordable housing (in which we can still keep even after I may go blind) and employment (to pay for the house!) that I can do with limited eyesight. If anyone have any ideas about what a blind dude can do for a living then please give me a holler. Until then I will continue to try to keep cool about this ordeal because I now have a family that I love very much. It is just now that they are begining to know how deep my problem is. Good luck and I'll check in every now and then. Oh yeah ... thanks John.

Date Entered:12/29/2003
Name: lrene f. cobb
Email: francheskia2002@yahoo.com
City: des plaines State: illinois
Comments:
I was diagnosed in 1990 @ the university of Chicago. I was told that i had two years to see. I am presently being seen by Dr. moe thru Lutheran General Hospital and I have 6 degree's of central sight remaining. I am interested in finding out more about the new surgical procedure that has been done @ Rush Hospital.

Date Entered:12/16/2003
Name: isabel haddad
Email: holahola_69@yahoo.com
City: caracas State: venezuela
Comments:
A TODOS LOS VENEZOLANOS QUE LEAN ESTO Y TENGAN RETINITIS PIGMENTOSA Y SEAN O NO PACIENTES DEL DR SAMUEL JACOBSON, FAVOR COMUNICARSE CONMIGO A MI EMAIL O LLAMARME AL O212 9927303 O DEJAR FAX. TRATO DE HACER UNA REUNION PARA INTERCAMBIAR IMPRESIONES Y COMPARTIR EXPERIENCIAS GRACIAS

Date Entered:12/11/2003
Name: sandra
Email: dshoban@optusnet.com.au
City: hebersham State: nsw
Comments:
No Comment

Date Entered:12/5/2003
Name: mumurity
Email: mallam@mumu.com
City: lome State: togo
Comments:
this site is cooooooooooooooooool keep it uuuuuuuuup

Date Entered:12/3/2003
Name: LYDIA
Email: LAC7561@AOL.COM
City: ORALANDO State: FL
Comments:
thank you for this web page. i have rp I am 42 old

Date Entered:12/1/2003
Name: Jim
Email: diaarchery@sbcglobal.net
City: Wichita State: Kansas/USA
Comments:
My wife has the condition. Any help will be greatly appreciated.

Date Entered:11/28/2003
Name: isabel haddad
Email: holahola@yahoo.com
City: caracas State: venezuela
Comments:
hola desde venezuela

Date Entered:11/24/2003
Name: Jael Espinal
Email: j1espi@yahoo.com
City: Dallas State: Texas
Comments:
I love your website. You provide wonderful info about RP.

Date Entered:11/24/2003
Name: vicky moore
Email: evansmom13@hotmail.com
City: Toronto Ontario State: Canada
Comments:
My nine year year old son was just diagnosed with RP. I am interested in communicating with anyone who might be able to trade information and support. I have had this confirmed diagnoses for three days now so I have probably just started on an emotional rollercoaster. RP doesn't have to always be the topic of communication.

Date Entered:11/19/2003
Name: ann chiappetta
Email: chiapet@bestweb.net
City: new rochelle State: ny
Comments:
Hi, this is my new email addy.

Date Entered:11/13/2003
Name: GWEN BAKER
Email: gem.bak@bigpond.com
City: Launceston State: Australia
Comments:
No Comment

Date Entered:11/11/2003
Name: Daniel Deleon
Email: daniel_deleon@vicav.com
City: Austin State: Texas USA
Comments:
No Comment

Date Entered:11/5/2003
Name: Heather Frazer
Email: hyfrazer@telus.net
City: Calgary, Alberta State: Canada
Comments:
No Comment

Date Entered:11/2/2003
Name: Marianne McClellan
Email: mlandy@stny.rr.com
City: Jamestown State: NY/chaut
Comments:
My son was diagnosised with RP at the age of 15, 3 years later I am still trying to find out as much as I can about this disease.

Date Entered:10/25/2003
Name: JOHN D. HOWE.
Email: johnboydh@hotmail.com
City: COBURG. MELBOURNE State: VIC. AUST.
Comments:
26/10/03. Hello my name is John I do have R.P. I'm 32 year's old.

Date Entered:10/23/2003
Name: asaba owerri
Email: homeboy_owerri_asaba@aba.us
City: miami State: florida
Comments:
guys uwa wu paw paw

Date Entered:10/21/2003
Name: Oscar
Email: esefrom818@aol.com
City: Not Entered State: Nevada
Comments:
I'm 18 years old, I have RP, i've accepted this and i've been somehow "dealing" with it.... it's hard...

Date Entered:10/21/2003
Name: RACHEL MITCHELL
Email: RACHMITCHE2002@aol.com
City: WESTBROOK State: MAINE
Comments:
I HAVE TWO SONS WHO ARE 8 AND 9 YEARS OLD WHO WERE DIAGNOSED WITH RP APROXIMATELY TWO YEARS AGO. I HAVE GRADUALLY BEEN EDUCATING MYSELF WITH INFORMATION ABOUT THIS DISORDER AND WOULD LIKE SOME INPUT AND EXPERIENCES FROM OTHERS WHO MAY HAVE THIS DISORDER TOO. ANYONE WHO WOULD LIKE TO CHAT ONLINE OR WRITE AN E-MAIL DISCUSSING THIS ISSUE, PLEASE CONTACT ME.

Date Entered:10/13/2003
Name: annie
Email: mramos@36aol.com
City: elizabeth, State: new jersey
Comments:
im 38yrs of age,living with rp has been very sad,i thanks god for giving me chance to raise my daughters and pray all the time for rp cure. may the lord bless you all

Date Entered:9/29/2003
Name: Gerard Jacobs
Email: gjacobs2@wxs.nl
City: Purmerend State: Netherlands
Comments:
Having RP for all my life, it runs in the family Just starting to visit the doctor to see what is possible

Date Entered:9/29/2003
Name: Pankaj Kwatra
Email: kwatrapankaj@yahoo.com
City: Not Entered State: India
Comments:
suffering from R P any friends can contact

Date Entered:9/27/2003
Name: MRS. Pacheco
Email: NA
City: Houston Texas State: USA
Comments:
Very cool website. I have RP with 10 degrees of vision, about 3 months ago I bought a microcurrent device and and loads of vitamins including Taurine, DHA and pine bark extracts and I believe my vision may be impoving. The place I got the program was from the Eye Store on the internet. It is the only thing I found in all of my research. The doctors say it usually takes a year to see results. You can order the device by itself for around 900.00 or the whole program for like 1400.00 Hope some more people will send more treatment options.

Date Entered:9/27/2003
Name: Saima
Email: shimmeryface@hotmail.comWa
City: Islamabad State: Pakistan
Comments:
Hi there I am Saima and looking for cool homepages and soon you are in my homepage section very well job done cool info regarding RP Keep up the good work

Date Entered:9/26/2003
Name: pankaj Kwatra
Email: kwatrapankaj@yahoo.com
City: india State: Not Entered
Comments:
r p patient

Date Entered:9/23/2003
Name: carol west
Email: cwest@britishvita.com
City: manchester State: england
Comments:
I am a sufferer of RP and have been for almost twenty years and I would like to say thanks to the FFB for all the information on their web site. thank you

Date Entered:9/21/2003
Name: ILISSA CLARK
Email: ILISSA1971@AOL.COM
City: CINCINNATI State: OHIO
Comments:
I WAS DIAGNOSED IN '1999. I AM 32 YEARS OLD. THIS DISEASE HAS CHANGED MY LIFE FOREVER. I HAVE LEARNED AND I AM STILL LEARNING TO "LIVE WITH" THE EVERYDAY "THINGS" THAT COME UP REGARDING MY DECLINING VISION. IT IS VERY HARD THOUGH. I HAVE COME ALONG WAY IN DEALING WITH IT. NEEDLESS TO SAY, I AM NOT THRILLED ABOUT HAVING RP. BUT I HAVE COME A LONG WAY IN ACCEPTING IT. I WOULD LIKE TO TALK TO OTHERS IN MY AGE GROUP. AND OTHERS TGHAT HAVE CHILDREN THAT HAVE RP, AS MY DAUGHTER HAS RP AS WELL. THANK YOU ... ILISSA CLARK

Date Entered:9/21/2003
Name: John
Email: rpmail@jwen.com
City: Not Entered State: Not Entered
Comments:
First Entry in new and properly working guestbook

 

Go Back to Main Page