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Disability / Compassionate Allowance

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It is mentioned from time to time that scleroderma is a disease that qualifies for "compassionate allowance" by US Social Security.


However, there is a list of 88 conditions (38 added in May, 2010) and it does not include scleroderma. Does anyone know where scleroderma might be listed?


Thank you,



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Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Craig, I can't find scleroderma listed as a compassionate allowance disease on SSA site either.


However, you may be interested to know that SSA is having a hearing, "Compassionate Allowances Outreach Hearing on Autoimmune Diseases"


Wednesday, March 16 2011· 8:30am - 5:00pm


Sheraton Baltimore City Center Hotel

101 West Fayette Street

Baltimore, MD


The hearing will focus on autoimmune diseases, including lupus, scleroderma, multiple sclerosis, rheumatoid arthritis, and vasculitis.


I found out about this hearing on the Social Security Site - if you search ssa.gov for "compassionate allowances" and go to "Compassionate Allowances Website Home Page" - at the bottom of the page it mentions this hearing. (NOT a very easily found announcement!) I don't know if it's open to the public or not.


Elsewhere I found, "If you live near the Baltimore/Maryland area and are available to attend the hearing to share your story about scleroderma, please e-mail James Edrington at [email protected] or call (410) 966-2153 by Noon on Monday, March 14, 2011. If you do not live near the area or cannot attend the hearing, you may still e-mail James your story."


(Moderator note: We do not allow email addresses within forum messages but are making an exception for this.)


Hopefully, as a result of this meeting, scleroderma will be added to the list of compassionate allowances and make it easier for us all to get approved for disability.


I've been denied by Social Security for disability too, am waiting for my first appeal hearing.



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Thanks for the information. It seems that the "compassionate allowance" issue regarding scleroderma sounds like a rumor, since it doesn't appear on the list. The diseases listed are generally terminal within a year.


Red - good luck with your appeal. My lawyer sent in my appeal, citing statute law regarding the illnesses (see Jeannie's post above). It was again denied, without so much as a consultation. That's with a history of sclero (slow onset), Sjogren's, pulmonary hypertension, myositis, all made worse by cancer treatment 8 years ago, difficulty walking (complete right hip replacement 6 years ago and peripheral neuropathy from cancer treatment[stem cell transplant]).


I wrote a letter to my congressman regarding the issue of the Social Security administation's failure to abide by statute law. I got a return letter of a form to fill out and sign so that my information could be accessed (per privacy law). No more news yet.


Imagine a private business operating like this!



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