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US disability form question


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#1 sandcat

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Posted 04 March 2015 - 06:59 AM

Hi,

 

I am trying to fill out disability forms. I am stuck on the question about "do you have a diagnosed condition that is expected to end in death?"

Right now I am diagnosed with systemic sclerosis, although my doctor is not yet convinced it is diffuse (I am, but that is another story.)

 

How would I answer that question? I don't even know how I am supposed to read it? Obviously my scleroderma will not end until I die, and it may (or may not, I suppose) contribute to that death. Anyone have any help for me? Thanks!



#2 Shelley Ensz

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Posted 04 March 2015 - 07:35 AM

Hi Sandcat,

 

Welcome to Sclero Forums!  I'm sorry you have scleroderma and need to apply for disability.

 

Generally speaking, the answer to this question would be "Yes."  See Systemic Sclerosis Prognosis and Mortality. And if you have severe systemic sclerosis, your case will be fast tracked by Social Security. See Disability and Scleroderma by NOLO.

 

That said, many of our members initially received disability based on other diagnoses, such as fibromyalgia, often because of the extreme lag between onset of scleroderma symptoms and diagnosis.

 

If you are doubting your doctor has you properly categorized, based on information on our site, then you are probably right. You might want to make sure that they are a listed scleroderma expert, and/or seek a second opinion.  Most usual rheumatologists have extremely limited experience with scleroderma and thus commonly get the diagnosis or treatment wrong.

 

So to optimize your care and longevity, you want to make sure you have a scleroderma expert on your medical team.  If you have to travel to see one, they are typically outstanding at working with your local rheumatologist or doctors to continue to monitor your care. Also see: Types of Systemic Sclerosis.

 

:emoticons-group-hug:


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

#3 Amanda Thorpe

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Posted 05 March 2015 - 01:07 AM

Hello Sandcat

Welcome and yes, the answer is yes. Scleroderma is a life limiting illness but we usually misunderstand what this means. When diagnosed in 2007, the answer to my life expectancy, was at least 10 years but here's the kicker, I was 39 years old at the time. The answer to how long I could have expected to live pre scleroderma would have been at least 30-40 years, so you see life limiting.

It's not just cancer that's life limiting and it's not just 6 months to 2 years that constitutes a life limiting disease.

I would answer yes, after all, if you're wrong I doubt anyone would sue you for continuing to live!

Take care
Amanda Thorpe
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#4 Joelf

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Posted 05 March 2015 - 10:59 AM

Hi Sandcat,

 

Welcome to these forums!

 

I'm sorry to hear that you have been diagnosed with Scleroderma and I would agree that you should try to consult a Scleroderma specialist as this bizarre disease does have lots of little idiosyncrasies, which make it such a problem to diagnose and treat correctly.

 

Amanda and Shelley have given you lots of advice and I hope that your claim for disability will be successful.

 

Kind regards,


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#5 Amanda Thorpe

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Posted 08 March 2015 - 02:55 PM

Hello Sweet

 

Do you mean that you have NOT had an amazing, spontaneous total plateau, in which everything gets better and scleroderma just slopes off into oblivion? No? Shocker! 

 

Hmmm, after 7 years I have not met anyone who has had such a plateau either, oh, sure scleroderma has stopped trying to kill them at every turn but the damage done is, well, done. 

 

:emoticon-congratulations:  :emoticon-congratulations: Here's to the expected permanent continuation of your disability benefit. :emoticon-congratulations:  :emoticon-congratulations: 

 

Take care.


Amanda Thorpe
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#6 sandcat

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Posted 16 March 2015 - 04:56 AM

Thanks to everyone who responded. I really appreciate the help and kind words.

 

To reply to Shelley, my doctor is the head of rheumatology at the state flagship teaching school, which is the best I can do in this state.

 

I was hoping to go to an actual specialist (like Johns Hopkins or Pittsburgh, where I have family) but my insurance changed and now I can't afford it. It's bad enough that I can't work and my husband is trying to support me and my cancer-surviving, lupus suffering mother (I know, that is another post sometime) on a teacher's salary. I do not want to burden him with debt that might outlive me. So at the moment a specialist looks like it is not going to happen.

 

I am hoping the disability may help. I tried to apply a couple years ago through the disability insurance I paid into when I was able to work, but was unsuccessful because of a lack of diagnosis. Now at least I have that. Your answers were all very appreciated.



#7 quiltfairy

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Posted 16 March 2015 - 08:51 AM

I am disabled and it took about 4 years to get it. A person usually has two denials, then a court hearing. 

 

I would suggest you call a disability attorney; they usually only charge if you receive the disability, otherwise they do not charge. Anyway, that is the way it works in most states; they take their percentage out of your settlement or back pay before you even get your first check.

 

If you have any other questions about how it works let us know.