I was diagnosed with Stiff Person Syndrome in 2001. Since becoming disabled, it seems like I have had to play doctor, researcher, insurance commissioner, political activist, etc., etc. So much for disability! I think the main problem is that when you have a rare disease, treatments are often denied because the people making the decisions doesn't even know the disease exists. That is where increasing public awareness comes in. I think we need a grassroots campaign (I hate politics!) and send letters and emails to all of our state and national representatives telling them about our disease and asking them for their support. I sent an Ohio Congressman a similar letter, and his office actually contacted medicare on my behalf in helping get plasmapheresis approved. I would love to hear other ideas of how we can no longer be invisible!
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Stiff Person Syndrome and insurances
- By mikeysps
- Posted November 4, 2009 at 11:57 pm · 4 replies
- In Medicare, medicaid and medical insurance
- Shared with the public
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4 replies
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- Newest first
- By Scarlett262
- Posted November 5, 2009 at 9:38 pm
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Hi. I'm a new member and have been encouraged to apply for disability for years. I am now unemployed because my SPS has progressed so much and am now having BP, pulse, heart problems. This is the "I never get sick" person speaking! I applied once when first encouraged by Mayo's, but was turned down. Stubborn me - would not appeal because I've worked outside the home since I was 9 years old and don't want to just give up. Seems like I have no choice now. IL is my state and I'm down south in a little town, so I go to Evansville, IN for on-time care. How is the best way to go about applying for disability? Single mom with two sons - I need help from somewhere! Hope you are having a "good" day and I agree with you on many points. Thanks!
- By Betty-Oops
- Posted November 6, 2009 at 12:08 pm
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Hi Scarlett,
A helpful link: http://www.disability.gov/
I wish you the best of luck. ;)
- By kattsqueen
- Posted November 9, 2009 at 12:24 am
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check out a sight i just found that is free!! Seems to be no hidden agendas there other than helping us folks with disability.. There are a few adds on their sights but lots of serious help there too with issues like grants filing for disability finding housing etc. Give it a look see.
karen (kattsqueen)
- By kattsqueen
- Posted November 9, 2009 at 12:26 am
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PS its called disability digest!! disabilitydigest.com
sorry about not putting that in my other post!
karen
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