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Disability Question

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Hello Kathryne


Welcome to the forums! Sorry you have other health issues on tops of scleroderma, just googled porpheria and it doesn't sound very nice at all! I reckon you get enough pain from scleroderma and Raynaud's so you certainly don't need anymore causes of pain, namely this porphyria malarkey!


Disability is such a difficult process and deeply personal, something "the administration" are oblivious to. I am in the UK and having my entitlement to one of my benefits reviewed right now, although I am expecting good things it's still an unpleasant process to go through.


I hope your appeal is successful and in the meantime have a wander around the site.


Take care and keep posting.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Kathryne,


Welcome to Sclero Forums! 


I'm sorry you have scleroderma...and lots more...and that you are going through the disability process.


For you and everyone else going through this, it is of utmost importance to keep on immediately appealing whenever you are denied along the way.  They count on the fact that people who are not disabled will lose interest and move on to some other interest, like a job, for instance!  But what happens is that it can also be enormously discouraging to people who are really and truly sick, as well, and many end up foregoing benefits they are entitled to. But it never, ever, pays to delay applying or appealing for benefits. They can only go retroactive so far, and many people delay so long as to even lose their qualifications for benefits, which is truly a sad state of affairs.


Pick yourself up, dust yourself off...and make sure that appeal is successfully filed, asap!



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi Kelly and Kathryne,

I am sorry for what you are going through. I am on long term disability by employers  plan and have also applied for SSDI. I did everything online, visited them once to show my passport to prove I am US citizen, filled out 40+ pages of survey, how  I spend my time.


Do you have a way to get any of the followings:

  1. Long Term Disability insurance 
  2. Short Term Disability insurance
  3. Long Term Care
  4. Supplement  Life Insurance

All of above play key  roles and very difficult  to get once you are on disability.


I hope you feel better  - Bless you

Kind regards,





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