If you’ve been recently diagnosed with RP you may be wondering what is in store for me. It should be noted that the RP journey is not always the same for everyone. I have known people who were still driving in their 70s and even 80s and also known people who had lost all of their vision in their 20s. Both these extremes are rare but can occur. If you have a family member with RP, it is most likely their path will be similar to yours.
With that in mind, there are stages of RP.
First Stages
At first you will notice difficulty in seeing in the dark or low light situations. You may feel uncomfortable in dark areas and have trouble driving at night. You may not be able to see the night time stars in the sky. This is called Night Blindness. At first it may not even be very noticeable or mildly annoying. Many people who do not have family members with RP don’t even bother seeking out an eye exam in this stage.
Peripheral Vision Issues
From there you will notice problems with peripheral vision. You may start becoming clumsy or not notice things you used to. Things or people may seem to sneak up on you. As with the night blindness, you may not seek an eye exam. At the beginning of this stage you might just think you are clumsy or not paying attention like you used to. As this progresses, this is when most people who do not have any family history of RP finally think about an eye exam. It is then that the full impact of an RP diagnosis becomes evident.
Diagnosed
A diagnosis of RP can be very difficult. This is especially true to those who do not have a family history of RP. Being told you are losing your sight due to a disease that you’ve never heard of is life changing. Numerous emotions can come rushing at you. Depression, Anxiety, Fear to name a few. Don’t be afraid to seek out mental health advice. Or reach out online or in your local community for organizations that provide support. You may need to make adjustments to your life. This can be overwhelming. Don’t be afraid to seek out help.
Driving
To worsen the impact you may also need to stop driving. Of all the adjustments that people with RP have to make by far one of the most difficult and upsetting ones is the decision to stop driving. None of us want to make this decision. As a result frequently the decision is made for us in any number of ways. One thing to keep in mind is that driving a car that you, because of your vision, are not fully in control of, can be dangerous. Not just dangerous to you but dangerous to others. We all need to be aware of this and not only not put ourselves at risk but also others. There are minimum standards of vision that are required to safely operate a vehicle. If you do not meet those standards, you should seriously consider giving up driving, even though doing so is very upsetting.
Legally Blind
Legally Blind is a standard that typically involves at least 1 of 2 measurements. There is field of vision, meaning how much do you see. To be legally blind you would have less than 20 degrees of peripheral vision. Normal peripheral vision is between 80 and 90 degrees. The other standard is visual acuity. That is how well you can see. It’s measured on something called your BCVA (Best Corrected Visual Acuity). BCVA is the measure of your acuity with glasses, basically. To be considered legally blind your BCVA has to be 20/200 or more. What that means is that you see something at 20 feet away like it was 200 feet away. For people with RP, usually the measure is the peripheral measurement. If you meet the criteria you can be registered in your state as legally blind. Doing so may make you eligible for services provided by the state as well as things like tax breaks. Each state is different and you should contact the state agency that provides services for the blind and visually impaired.
Visual Acuity
As your field of vision narrows, you may start to have issues with your visual acuity. This occurs when the photoreceptors in the central part of your vision are affected. It is at this point you may want to see a low vision specialist. They can help you with various adaptive aids. Both optical and video magnifiers. As well as tinted glasses can help make the best of your vision. You should contact your state agency or other agencies that assist the visually impaired. They can help you with rehab or introduce you to other adaptive aids or strategies to help you cope with your vision loss. There are many technological advances with computers and video magnifiers, wearables and other gadgets that can help you make the best of your vision. You may at some point have trouble getting around. This would be the time to contact your state agency or local organizations about getting O&M training. O&M stands for Orientation & Mobility. This basically is training on how to use a white cane to get around. Many people with RP are hesitant to get cane training. Since most people with RP still have some usable vision, they think they don’t need the training. Or they are afraid of the stigma or are embarrassed to be seen with a white cane. From experience, you should consider getting the training when you need it. The anxiety of thinking about it overblows the actual results when you do it. It will help you and whatever you were thinking that prevented you from getting the training will seem silly as you learn and gain confidence.
Timeline
It should also be noted that for most people this journey takes decades. Also it should be noted that most people do not lose all their vision. One other thing to keep in mind if you are newly diagnosed and reading this. The rate at which developments in research are moving, it is very likely that the journey described here will be quite different for you than it was for someone diagnosed with RP 40 or even 20 years ago. Though there is no cure, there are the beginnings of treatments that will in time radically alter the path described here.
