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Almost 20 years with HSP

Posted , 3 users are following.

CM84
CM84

Just to introduce myself real quick. I'm a 29 year old firefighter here in the US, pretty healthy overall, decent shape throughout my life and I'm married with 2 kids. I was diagnosed with HSP when I was around 10 or 11, sometime in middle school. Since then, I've been dealing with it on and off for almost 20 years.

I am actually sick with a cold right now and guess who appeared just a few days before I started having symptoms? You guessed it, Mr. HSP. I do have the occasional stomach problems and some joint pain but it's mostly the rash on my legs and this week it seems to be a bit more painful than usual.

I've learned to deal with it and I pretty much know when it's coming. I see a lot of posts about people just getting it and I know it will go away for a lot of you but some of you it won't. And I guess it's good to come here and discuss this disease that 99.9% have never even heard of. I just joined so I am here to help anyone with any questions if they have any.

1 like, 3 replies

3 Replies

  • mary55774
    mary55774

    Posted

    Hi and sorry to hear you've had HSP for so long, sorry for you and disappointed for me - I was hoping everyone eventually got over it! My son got it in December 2011 (13) and we've been getting quarterly checks done since, with his latest bout just happening this week. Can I ask how your kidneys are with all this? I guess my main worry is that with every fresh attack, there's a higher risk of permanent damage. This latest bout is worse than the initial one, and he's got 3+ blood and 3+ protein in his urine. He was in the local paediatric department, where he is a regular now and they checked his urine the day he took the latest attack and all was normal, but since then as I say he's gone to +3s in everything (we have stashes of urine sticks at home for checking regularly). I just hate running him in all the time as I know he feels like a pin cushion and hates the needles. He's due up with the Head of Renal in the children's hospital on Thursday, so at least I'll get him seen and everything double checked quickly.

    It's great to hear that you've managed a great career anyway, at least it shows that it is a manageable condition if it doesnt go. Well done and thanks for offering your help with answers - they're very hard to find on the internet!

    Good luck and thank you. Mary

  • terri27731
    terri27731

    Posted

    Hi

    Sorry to hear you have suffered for so long. I wondered whether you had ever tried an exclusion diet cutting out wheat and dairy and then rebuilding your gut flora with helpful bacteria? Are there any other remedies you have tried. I ask for my daughter's sake as she has had this for a year now.All the best to you. Terri

  • CM84
    CM84

    Posted

    Mary - I haven't had my kidneys checked specifically in a while but I do get a physical every year because of my job and so far everything has been good. I'm sorry to hear about your son, I know how frustrating and scary it can be for the parents and child. I remember my mom's face when I had 10 different doctors/students looking at my legs back in 95-96 when it first happened and no one knowing what it was. I would definitely keep checking his urine and kidneys because that's the most dangerous part of this whole thing. It is manageable and hopefully he will grow out of it.

    Terri - When I was young, my mom always tried the latest herbal remedies and things like that but I ate like any normal kid, as far as I can remember. As an adult, I eat more lean proteins, more whole grains and I have dairy as much as the next person. I haven't really excluded much of anything. I have noticed this year I have had more "break outs" because I've been sick more with my child going to daycare and it usually precedes a cold or flu. I tend to take a pain reliever if my legs get really bad, like motrin. Sorry I couldn't be more helpful, it's just a weird disease.

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