I am an adult and have the chronic form of this disease....
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I am an adult and have the chronic form of this disease. I was diagnosed in 1989. After being diagnosed, shortly after surgery, I had all the typical symptoms. I had hematuria for four years, and have continuing proteinuria to this day. I control the loose stools with medication and diet. The initial breakout of purpura took about a year to resolve, but I have had only one other time, about eight years ago, with the purpura appearing on my legs. I found that all anticoagulants cause problems for me, especially those contained in pain medications. I do not take any OTC medications and am very careful about any medication prescribed to me. I have always worked outside the home and have four grown children. I now find that I cannot take a job that requires me to stand or walk for extended periods of time because the hematuria returns. I also have problems controlling my blood pressure since about three years after the initial attack. I have never known any other adult with this condition and would like very much to communicate with another adult with the chronic form of this illness.
[i:3c0f75b462]This message was automatically imported from the original Patient Experience[/i:3c0f75b462]
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rocky31676 Guest
Posted
loreto86590 Guest
Posted
I first had HSP when I was 10 and have had full recurrences since then and constant flare ups I am now 55.
Not much that I haven't tried I have had it settle for 2 to three years at a time
for me it's mostly in my bowel. I get joint pain. Palpable purpura haematuria. All the time. And other symptoms. Medications wreak havoc in the long term.
My biggest challenge when I was in my twenties was getting medical professionals to see it was HSP I have had a great immunologist now for about twenty years and that has made a big difference
trish60368 Guest
Posted
I AM ALSO AN ADULT PATIENT WITH CHRONIC HSP WITH COMPLICATIONS.
MY EMAIL IS ALL LOWERCASE - trishstull22@aol.com.