Retinitis Pigmentosa Support Group

Retinitis pigmentosa (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 people with RP do not become legally blind until their 40s or 50s and retain some sight all their life. Others go completely blind from RP, in some cases as early as childhood.

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social security disability

I am new to this site, and want to say hello to everyone.
Ive got a question regarding ssd. I was diagnosed with rp when i was 18 years old. I am 27 now. My eyes have gotten alot worse. Im considering applying for social security disability. Everything I have read and people I have talked to make it sound like its not an easy process. Also I have a wife and son and Im not sure if they are eligible for anything either. Any help or advice would be greatly appreciated.

Replies

deleted_user
deleted_user

my partner is 24 and has been recieving a DSP for about 2 years. it wasnt that hard for him to get and it was definatly a good idea so go for it and good luck!!! P.S do you have a guide dog?
deleted_user
deleted_user

i dont have or need a seeing eye dog quite yet. But I am going to start looking into that in the near future. Are you in the U.S. ? I'm not sure what DSP is. I am still looking to find out anyones expierience with ssd if anyone has any advice or just your own personal struggles with getting accepted for it , I would appreciate to hear from you.
deleted_user
deleted_user

my best advise to you is to go talk to someone. That is the easiest way to get an answer =) I am going into my disability office in the next couple of weeks as well. Just got unemployed and am having a really hard time finding work simply because I cannot drive due to RP, so we will see what they say I guess! Good luck to you!
MamasChild1
MamasChild1

I would imagine alot depends on the degree of the RP case. Legally, I can still drive at night but have taken myself off the road. That makes working hours limited to near-impossible - and economy is bad enough. However, I fear each successive eye doctor prognosis - let's face it, if they take away your license - in this day and age?

Depending on the case, your doctors, together with your State's Commission for the Blind, are required to get the ball rolling for SSD. I contacted them in hopes of that being willing to supplement with something part-time. I got a cane, a discount bus pass and info on AccessLink which parallels public transportation. They don't GET you on SSD. It's a case-by-case basis. Commission supplies legal aid to represent you for SSD - once doc makes a judgement - but it's still a process. I know of a case (not sight-related) where doctor has confirmed case being worthy of SSD for years - and still the patient is either denied or waiting. But if you / your doctor has AFFIRMED your eligibility, appeal - appeal - and don't let up. Good luck.
deleted_user
deleted_user

Just to add my experience: I took myself off the road when I got down below a 15 degree field of view. I had my personal doctor write out a letter stating that I was legally blind, and then I went and applied for S.S. benefits in Califirnia.
Social Security sent to 2 of their doctors: an ophthalmologist and a psychologist. Neither one of the SS Docs would discuss their findings with me, the patient.
One month later, I was approved for full Social Security benefits. The key part of this equation is that being able to safely drive was a job requirement where I worked. This all happened 8 years ago, and it's been smooth sailing ever since ... with the exception of my vision now only being about 5 degrees wide now.