PRP and Disability

From the Editor
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.

Please send your “sharings” via email to

✽  Americans with Disabilities Act (ADA)

✽   Patent Advocate Foundation

Memorandum in Support of Ian Littlejohn

Bill M (Plano, TX)

The PRP community really 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.

Please share what you have learned about filing for disability as a patient diagnosed with PRP. Send an email to