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Henoch-Schonlein Purpura

Posted , 4 users are following.

bekah1990
bekah1990

I live in the United States, however I was unable to find alot of information from people here, so I am reaching out to try and get some answers. I was diagnosed with HSP back in January of 1998, when I was 7 years old. I was placed under the care of a kidney specialist because of damage to my kidneys during the initial onset. I have had 6 known relapses as my Doctors have called them, and other possible 5. However in the nearly 12 years since I became sick I have suffered chronic lung infections, recurrent strep throat (which finally stopped with the removal of my tonsils), and frequent painful kidney infections. I have also dealt with arthritic type pain and joint swelling, normally with no sign of any rash, however no doctor seems to pay any attention. I am 19, a full time student and I am in so much pain some days that I can hardly walk between classes. Do other people dealing with this diease have these types of problems, and if they have what helps them function on a day to day basis?

0 likes, 3 replies

3 Replies

  • ellie-mai_03984
    ellie-mai_03984 bekah1990

    Posted

    Hi I'm Ellie-Mai I was diagnosed with HSP when I was 11 and I'm now 18 I was diagnosed with the worse case of it in the U.K. But don't worry I have recorded such a large amount now but some days my legs can become horrific painful I usually try to keep them warm and rest them as much as I can. I know it isn't much but I hope you're better and beck to yourself one day. It does get better I promise
  • kacismom
    kacismom bekah1990

    Posted

    We are also in the US. My daughter is now 18 and was diagnosed in seventh grade. The latest treatment her doctor has used is the Rituximab infusions. She had two in December 2014 and two in September 2015. Although she still struggles every day, her B cells have not repopulated, which is a good thing. She is a full-time college student as well but it is difficult to maintain focus when you have pain daily. She also takes Cellcept along with a host of other medications. Staying busy and occupied is what helps her cope. Also, she uses heating pads, hot baths and massages to help.
  • blueflamingo
    blueflamingo bekah1990

    Posted

    Hi,

    My HSP has been ongoing for five years (now 29 years old). I don't have lung/throat/kidney infections but can certainly relate to the arthritic joint pain and joint swelling, which is one of the recognised symptoms of HSP. I had the worst swelling/pain in my ankles, followed closely by knees and hips. My finger joints sometimes swelled up but less often. The only thing that helped my joints was the medication Dapsone, which surprised the doctors. I've been on it for two years now and haven't had any joint pain since starting. It also dramatically improved my rash (which was the expected result).

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