Living with Retinitis Pigmentosa

Hey everyone. Quick question for the group. Does anyone know if someone living here in the States with retinitis pigmentosa is eligible for any kind of disability benefits or something similar? Thanks a ton for the help!

I suppose you have a point there. You really ought to submit all your medical records to Medicare so they can officially determine your disability rating. I’m actually dealing with retinitis pigmentosa myself, and I’ve already started that whole bureaucratic process. That said, I did travel over to a clinic in Canada—you might want to check out my blog for more details: . In my experience, the RP hasn't just been halted; I feel like there have actually been some genuine improvements in my vision. The facility I visited in Canada is the Mayo Clinic ( http://www.tcmrp.com/ ), and I've laid out all the specifics regarding the visit on my blog.

Mark Diaz83 said:Hello, everyone. I have a question. Does anyone know if someone diagnosed with retinitis pigmentosa in America is entitled to any disability benefits or similar assistance? Thanks in advance for any answers.

Greetings.
I live with RP myself. It was diagnosed roughly 11 or 12 years ago. I have been on disability retirement for nearly two years now. Prior to that, I worked as an accountant.
The condition is progressive. Daily tasks have become difficult, driving is out of the question, and many other basic activities follow suit.
The situation I find myself in—and likely others living with RP—is quite grim. Because of this disease, I am unable to work or earn a living, yet my disability check is merely 1 $43., leaving me wondering how one is expected to survive on such amounts.
I am also preparing to look into whether I qualify for additional compensation for physical impairment, or perhaps some other form of aid, because a standard disability pension is simply not enough to live on. It is a profound embarrassment for our society. Healthy individuals enjoy certain so-called "privileged" pensions or military pensions (which can be 5 to 10 times larger than disability payments), while those with actual disabilities struggle to afford the basics.
Our illness limits us in so many ways, yet society seems intent on limiting us in our most fundamental existential needs. What is left for us?...

Hey everyone, I'm Hrvoje. Dealing with some PCOS issues here—if there are any women in Seattle going through the same thing, I'd really appreciate being able to chat about it.