One of the most valuable tools for me to cope with and adjust to the diagnosis of Retinitis Pigmentosa and the years to come were various resources, both online and in person.
The Retina Foundation
Locally, The Retina Foundation of the Southwest is amazing. Even if you aren’t local, but need help or advice I would strongly suggest to contact them. They can likely guide you where to turn for something locally. They also conduct clinical trials, one of which I have participated in, and are a very good knowledge base as well as support system.
http://www.retinafoundation.org/ At the Retina Foundation I personally see Dr. Birch and Kirsten, the assistant.
Texas Retina Associates
Texas Retina Associates is another great resources for the medical side of RP. They have amazing Dr’s. Dr. Spencer is with Texas Retina Associates and he is actually the doctor that performed the surgery on my eye for the clinical study which I will explain later.
The Retinitis Pigmentosa Community on Facebook
I’m an avid Facebook user, so having an online support group and interactive forum very easy to access has been wonderful. On the Retinitis Pigmentosa Community FB page, there are people from all walks of life who just want to vent, share their experiences, ask questions about experiences or others, or just know that there are others out there that are experiencing similar issues. For me, it’s reassuring to see some people who are middle-aged who do still have their vision, as I hope to still have it by that time as well. I love technology so there are lots of posts about Ipads, and other products and how visually impaired users use them. Its a very fascinating site and I would encourage you to check it out if you have a Facebook.
Foundation Fighting Blindness
This is a wonderful organization which will provide you tons of information on RP itself as well as living with blindness. They can help you find resources and are just another great resource out there, free of charge.
Vocational Rehabilitation Program or Department of Assistive and Rehabilitation Services
The name of the program depends on what state you are in. In Texas, it’s called DARS (Department of Assistive and Rehabilitation Services). This is a program which helps individuals either get through elementary-high school or get gainfully employed. Since many careers require a degree nowadays, this often involves helping get the consumer through college. I will go into this in more detail in another post as well.
Again, I would avoid a lot of the sites that just give purely medical knowledge. Most of what they say is correct however each person who lives with Retinitis Pigmentosa should not be lumped into a statistic about how many RP individuals lose their sight by such and such age. Everybody progresses at their own rate and a lot of times these statistics do more harm than good, I’ve found.
There’s so much information I want to tell you all about, and I think it will be nice for others to have one place to get a lot of this information. I just have to break it into posts and unfortunately my schedule hasn’t allowed me to get online very often and sit down to write a post.
If you have any other resources that you have found helpful and would like to share, I highly encourage you to do so. At the same time, if you have any additional questions or comments, please feel free to comment and I’ll get back to you as soon as possible.
Have a great weekend!