Experiences with Retinal Degeneration
Mi Historia, by Gloria

Hello, my name is Gloria. And I have Retinitis Pigmentosa. I live in a very pleasant city called Cuernavaca and it is in Mexico. I am part of a very large family (5 sisters and 4 brothers) I am the only one in the family who has RP. I was investigating among my cousins and they have not RP. I think that the one who had it was my grand-grand mother.

Because of we are a very large family, my parents never realized that I have troubles to see at night. They were more interested in my others health troubles (heart and rheumatic fever) and because I am the 7th of the family, they had a lot to do with all my brothers and sisters. In that time my oldest brother was 14 and the youngest was 2. I have thought that it was better say that I was a very distracted girl. When I have to go to the doctor to take a blood sample, the needle always was obstructed because the blood coagulated inside. (Now I know that I had circulatory troubles).

All the years I spent at primary school, I felt that I was a silly girl. When I was 10 years I started to wear glasses because of the astigmatism.

After secondary school, I studied Pivoted Accounting and Secretary and start working at 17 years old.

In 1979 I wanted to work as a baby sitter in England (one of my sisters used to live there) but I realized that I was not able to go back To the town my sister lived, so, I ask her "how do you see at night?" and she told me "I see just the same as in the day, but...at night", Do you have trouble to see at night, she asked me and that was the way that I have very clear that I had a problem in my eyes. That situation was quite normal to me because I never had seen well at night. I decided to take some tours and I spent all the money that I have taken to live one year. And come back to Mexico. I got work and immediately I went to see the doctor. He told me that what I had was a inherited disease called RP, that it was degenerative and there were no cure for it and I have to get ready because I was going to get blind within 10 years more or less. In that time I was 19 years old. Obviously I got out of the doctor's office very sad, frightened and crying, I had a mix of feelings that I

The years were passing and I have any changes. When I was 25 I had a stroke. I am quite sure that the circulatory trouble was something to do there, and also the bad alimentation I had at that time, (the meals in the dining room of the office were bad and I was eating fried eggs during 2 years, adding that my work was very stressing, used to smoke, and drink a lot of coffee). After the stroke, to be exact, the first night that I spent at hospital I realized that I start losing sight, and started with new exams. The doctors say the same, that I have RP. They did not put much attention to this.

I got a very hard depression, because the stroke, I stop talking, walking, it was terrible. I stop working, I moved from the city of Mexico to a small town called Cuernavaca and all my friends stay in Mexico, I and I felt day to day that I was loosing my sight.

The place where I live is out of the small town, it is on the suburbs of Cuernavaca, and so I feel that the world has forgotten me. My family never realized that I was having a very, very hard depression.

I knew about the Cuban treatment in 1987 and I ask my ophthalmologist and he told me that that was just lies to take the money of the ignorant. Instead, he offers me a protocol with Vit E and taurine (aminoacid) and I believe in him, I took the vit e and the taurine for 4 years and in all that time, I realized that I kept on losing vision. At the end of the protocol there were no good results, and was this time I decide to go to Cuba. I send my studies to Cuba and had a date for the treatment. I cancel the date 3 weeks before because I knew about a Russian Doctor that was making a cheaper treatment and she was in Mexico, so I tried it. I have not good results. I had to wait one more year to go to Cuba, because I wanted to close very well all what the Russian doctor had made in my eyes. I send again my new studies to Cuba and in Sep. 1993 I went to Cuba, I rescue some vision (peripheral and central), I was very happy, and when I was back at home I start to search for work. I tried to do several direct sale

I just came back from Cuba in March 2000 and I have a very slight better.

If you would like to have your story listed, please email me at rpmail@jwen.com

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Page Created 4/25/2000
Page Updated 6/7/2000