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- By joshua · Posted November 22, 2008
- 0 replies
- My disease has changed my life in many ways,I hate to say it but it was for the better before i was living like i had nothing to live for now i do its funny how that works isnt it ...
- By mardia · Posted November 22, 2008
- 0 replies
- Has anyone heard of research suggesting a connection between inherited spherocytosis and constant hunger ...
- By camae · New reply November 22, 2008
- 9 replies
- It's now been 16 months since my sons diagnosis with HSP. He was most recently hospitalized for 7 days before Christmas with bleeding in his lower intestines. This time the IV Prednisone did nothing to ...
- By aVEDSer · New reply November 6, 2008
- 2 replies
- I saw some beautiful zebra artwork on the web and wrote to the artist to request o zebra holiday card. She replied- I would be happy to create a Zebra holiday card for you. As soon as I have something ...
- By aVEDSer · New reply November 2, 2008
- 8 replies
- My test results showed I have Vascular Ehlers-Danlos Syndrome. They found out on Valentines day this year and I was told the day after. There really isn't a doctor that I am aware of that understands ...
- By stevebro · New reply November 1, 2008
- 19 replies
- Anyone around diagnosed as having Stiff Person Syndrome, an autoimmune neurological disorder? Does anybody have experience with treatment other than valium as medication? I really only hear from a british ...
- By camae · New reply October 22, 2008
- 9 replies
- Hi all I've posted before about my son Mik who has been sick with HSP for the past two years. We are still waiting to hear about his appeal to SS for assistance so he can get Ins for better Medical care ...
- By walter_comer · New reply October 8, 2008
- 3 replies
- Interesting little adventure this morning. I'll leave out the long part. But, I wound up getting the # of someone at the bigger newspaper in Western NC. I called the lady there, and they may, at some ...
- By jane_morgan · New reply October 7, 2008
- 13 replies
- Need someone to talk to who has TARLOV CYST Disease PLEASE EMAIL ME AT morgan.652@osu.edu ...
- By FaithLoveHope121 · New reply October 3, 2008
- 4 replies
- I have been dealing with this eye disease for about 13 years now. These last 2-3 years have proved to be the worst of them all. Not so much the disease itself but the treatments of Immuno Suppresssants ...
- By Jannie · New reply September 24, 2008
- 2 replies
- To all September is Pain Awareness Month. We need numbers to let others know that we are here and need their support. Jannie State of Michigan Leader POPAN Detroit RSD/CRPS Spoke Person ...
- By Melissa1 · New reply September 18, 2008
- 3 replies
- Hello, My name is Melissa. I am a parent of a child that has been diagnosed with one of the periodic fever diseases. Would like to chat with other parents. Thanks ...
- By LauraB · New reply September 6, 2008
- 6 replies
- Inspire............support community Let's start talking to each other We don't have to share the same disease We just need to care........that is what I thought this site was for. Come on let's get going ...
- By lillysnana · New reply September 2, 2008
- 1 reply
- Hello. I am new here, my name is Gwen. I have a 17 year old son named Josh. He was born in 1991. During my pregnancy with him I developed some sort of infection, which was never ruled out. At birth my ...
- By Margaret_Clark · New reply September 2, 2008
- 12 replies
- I live in the UK and was diagnosed with cerebral vasculitis 10 years ago after suffering from violent headaches, mini strokes and intense pain in my toes and fingers . I had a lumbar puncture and MRI ...
- By shellymoon · Posted August 29, 2008
- 0 replies
- Brain, Stomach, Limbs, Eyes ectra does anyone in the group happen to know of a doctor or doctors that are here in The United States that know of My Rare Disease but need someone to be used as there Ginny ...
- By DrJim · New reply August 27, 2008
- 3 replies
- I'm participating in s study looking for exposure to uncommon organisms in people who have a high exposure to domestic animals and/or ticks. There is a preliminary study showing the presence of some uncommon ...
- By rickthurbon · New reply July 9, 2008
- 8 replies
- Isaac's Syndrome is so debilitating and rare Unless I contact other sufferers I feel so alone as no one else can understand what I'm going through Rick Thurbon Sydney Australia ...
- By irisheyes71 · Posted June 18, 2008
- 0 replies
- I am looking to talk to anyone who has experienced any of the above and how they were able to handle it, what inpact did it have on your developement ...
- By kennethpletz · New reply June 15, 2008
- 3 replies
- I have gone from being quite active � playing tennis and hiking and traveling all over the world to walking with a cane and having a very hard time going up and down stairs. I�ve pretty much lost the ...
