I have been caring for my 22 yr old son for the last year. He was diagnosed with HSP in Oct of 2006. He has been unable to work since it first appeared and has accumulated more than 80,000.00 in med debt. Even now he isn't recieving the care he needs, we haven't been able to find a Rheumatologist who will even look at him without insurance. I take him to a low income clinic the doctor there runs monthly labs tracking the blood in his urine and writes prescriptions for his pain meds. I pay for everything myself. He has been turned down twice for Medicaid and once for SS. I am so discouraged to see him so sick and be unable to get any help I don't make enough income to keep this up. I can't remember the last time I paid any bill on time or in full.
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Help for adult with Henoch Schonlein Purpura
- By camae
- Posted November 9, 2007 at 4:31 am · 3 replies
- In Financial issues
- Shared with the public
3 replies
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- Newest first
- By jeanie379
- Posted November 10, 2007 at 2:37 pm
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Hi,
I don't have your disease but I do know a bit about SS disability. I didn't know if you were aware that they turn everyone down the first time. You have to apply again and DON:T GIVE UP!!!! After being turned down 3 times, I went and saw a lawyer who told me that it was because I was so young...at the time I was only 38. I'm now almost 51. As soon as I asked for the form that SS required to say you were getting a lawyer, they approved me. My lawyer said that I had qualified for many years because of arthritis in my knees from a congenital defect - I didn't walk with aid(crutches or wheelchair) and I had met all the other conditions as well. It was several years after I was on ss that I became sick with various autoimmune illnesses.
I've had no problem with SS since then. So please don't take the turn down personally, reapply!!!
Also, if you are low income - I understand from some people in my support group that the drug companies will help with the drugs...sometimes even supplying them free of charge.
Hope this helps,
Jeanie
- By camae
- Posted November 25, 2007 at 11:33 am
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Thank you for your support. We're having such a hard time here, on Thanksgiving the purpura was so bad it was solidly covering his legs the only actual unaffected skin was behind his knee's. Seeing my son like this in so much pain is nearly impossible for me to deal with. The clinic I take him to keeps expressing fear of creating an addiction with his meds, but what he's on now barely approaches the level of pain he's feeling. Part of me wants to say to them to forget about addiction and deal with what he's living with now. No one should have to live with constant pain. The toll it's all taking is showing in his emotions some days he just cry's and I can't help him other than to hold him.
I've become more aggressive and started writing letters to our local politicians. The response so far is that they can advocate for him but can't change the way the system is set up to work. I'm feeling so discouraged everything moves too slow.
- By camae
- Posted May 9, 2008 at 4:12 am
- Report post
I tried posting photo's of Mik's condition before but couldn't figure out how to do it . I hope this link works.
http://cmere58.winkflash.com
I've set this up so it should be public. I'm still hoping to hear from an
other adult who has experienced this deisease and would like to share their story.
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