I am an adult and have the chronic form of this disease....

Posted , 16 users are following.

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]

0 likes, 20 replies

20 Replies

Prev
  • Posted

    Do you know the cause of your HSP? Do you think some infection (viral or bacterial) after surgery could have caused this problem? 
  • 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 

     

  • Posted

    I AM ALSO AN ADULT PATIENT WITH CHRONIC HSP WITH COMPLICATIONS.

    MY EMAIL IS ALL LOWERCASE - trishstull22@aol.com.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.