What is Retinitis Pigmentosa
Retinitis pigmentosa, or RP, is a genetic eye condition. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many peop...
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Recently diagnosed, I'm scared, anything I can do?
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Hi, my name is Sarah I'm 21 years old and found out I had RP a little over a year ago. I've had horrible vision since I was 6 and have been seeing eye doctors regularly, but nobody had even mentioned a bigger problem to me until I went to get new glasses after mine had broken in a bad car accident. The eye doctor told me first that I had a "retinal condition" and that was pretty much all he told me, he referred me to a retinal specialist. So not only had I just lost my first car & gotten injured in a car accident, I had to face this new problem of my retinal condition. It was not a good month for me.
When I went to the retinal specialist he had confirmed that what I have is RP and I would eventually lost my vision. I was horrified, I went home and cried for a really long time. My peripheral vision is already really bad and my night vision is pretty much gone, as well. It still scares me to know that one day I will lose my vision and I don't know how to cope with that. I'm a photographer and my vision is essential to what I do. I did, however, go back for my yearly check up with my retinal doctor and he said nothing has changed from last year, which made me feel so much better. I was really just wondering if there's anything eye "exercises" or some kind of therapy I can do to prolong the progression of this disease and possibly keep whatever is left of my peripherals and night vision. Posted on 09/30/09, 11:09 am |
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Hi Zananski,
I'm sorry to hear about your diagnosis, I remember going through that myself and it was difficult to deal with for sure. I was a pilot and had to give up my career immediately, you should still be able to work as a photographer for a very long time, so don't give it up. There isn't any known therapy that proves to slow down the progression. Some people take huge amounts of Vit A, but it can be dangerous to your liver, so talk to your doctor about it first. I believe living a healthy life is the best thing you can do. 
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Hi Sarah! Welcome! Sorry to be coming in on this so late, I just now read your post. Wow, I remember my feelings when diagnosed last fall so vividly. It's great that you haven't lost any vision in the last year! Just so you know, there's ALWAYS something you can do to help keep your eyes healthy! Don't ever feel like you just have to wait to go blind. There are books on eye exercises (which I will find and send you a message), there are supplements like perfect eyes from Nature's sunshine, changes in diet and water intake are really helpful. Increasing the circulation to your head/eyes with things like good posture (especially your neck)and sacral cranial massage to increase blood flow, increased exercise to improve your circulation, wearing good quality sunglasses any time it's sunny outside, reducing your stressors and adopting a really positive attitude (which it sounds like you have). Finding joy in the little things in life. I have changed alot of things with the goal to have a much healthier body as a whole. If you can work on that and make a difference, the skies the limit! I'm not a doctor and have no scientific evidence of what slows RP but I know if I'm healthier it will help every part of me..I'm not just a set of eyes..;) I'll collect some info and send it in a message to you. Stay strong!
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