PRP Survival Guide


Issues related to disability

The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.

Share what you have learned about filing a claim for disability or other financial aid opportunities as well as the roadblocks and complications your have encountered. Share articles you feel might be worth reading or websites worth visiting.

✽  Americans with Disabilities Act (ADA)

✽   Patent Advocate Foundation

✽   Memorandum in Support of Ian Littlejohn

Bill M (Plano, TX)

I will be the first to admit that the PRP community in the United States needs to get a better handle on filing a disability claim with the Social Security Administration.

Geri B (Lakeland, Fl) recently shared the following website. Disability Evaluation Under Social Security.

Not a bad place to start.

What we really need are samples of applications that WORKED and appeal letters that WORKED.

Karen B (Rochester, NY)

I feel like screaming right now. I just came back after explaining to my primary physician that my feet hurt so bad can hardly stand or walk for 10 minutes on them.

I asked, “How am I suppose to work if I can’t do that?”

He responds, “You can’t … well … duh….” Then he goes, “You may need disability.”

I think, “Duh.” I told him I started a new job and don’t have any disability. I said, “WE need to talk about state disability.”

I think the WE comment made him uneasy. He responded, “That will be hard double.” Then he changes the subject.

When are our doctors gonna get it? I feel like I’m caught in the middle with 3 doctors (primary care, podiatrist and dermatologist) that want to help. But when you talk DISABILITY they turn an go in the other direction. They don’t get what we go through. I even though I showed him my feet, he directed me back to my dermatologist. I’m so frustrated! His answer to my problem seems to be a handicapped sticker. I hate getting a sticker, but it has be done so I can get into work.