Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Bob, 55-64 Male (Patient) Published: April 21

I was approximately 8 years when I contracted Henoch-Schonlein purpura, I was seen and diagnosed in 1959. I experienced severe stomachaches, rashes, and joint pain. I also had a loss of appetite. Thank goodness for codeine. I recovered after about 6 weeks. No ill effects since.

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Comment from: ktk, 35-44 Female (Patient) Published: September 09

I had first signs of Henoch-Schonlein purpura (HSP), rash and upset stomach, at 8. They lasted for about a month and I was never officially diagnosed, although in my medical records the doctor wrote in, possible HSP. At 18, I had flare up that was quite bad, I was sick for two weeks, got the rash on my legs, swollen painful joints, etc. I ended up in the hospital for 10 days. Follow up at home was another few months. At 30, I had another flare up, rash, sore swollen joints (especially in my legs). Today, in my 40s, I woke up with stiff joints and severe flank pain. I'm waiting to hear back from doctor to see if everything is ok.

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Comment from: hpalomo, 7-12 Male (Caregiver) Published: May 23

My 12 year old son developed Henoch-Schonlein purpura. He started with a mild rash on his legs, mostly below his knees, and on his buttocks. He also had a sore throat, and just wasn't feeling well. He saw his primary care physician and was diagnosed with purpura. His strep test, blood work, and urine test all came back normal. After 2 weeks the rash was quite significant, almost shocking to look at. He still has a sore throat, and just doesn't feel well. Thanks to your website I have knowledge of this auto-immune disease, and know what to expect. I still am taking him to the doctor today to have a checkup.

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Comment from: AmyCB, 35-44 Female (Patient) Published: March 13

I was diagnosed with Henoch-Schonlein purpura when I was about 15. I got the rash all over the lower half of my body. I went to doctor after doctor before I was diagnosed. I am now 42 and about 2 years ago I was diagnosed with kidney disease. I continued to have a large amount of protein and blood in my urine and the doctor I worked with continued to encourage me to have a 24 hour urine done. I finally have done it and my 24 hour urine was 1750 and it should have been less than 150. I went and saw a nephrologist and was started on medication to protect my kidneys. I will be on that for the rest of my life. I have had 2 children and always had a large amount of protein and urine noted in my blood and it was never checked. I am thankful that I am more than likely at my baseline with my kidney disease and so thankful that someone stayed after me to get testing done.

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Comment from: kristi1980, 7-12 Male (Caregiver) Published: December 16

My son is 9 years old, he was diagnosed with HSP (Henoch-Schonlein purpura) when he was 6. The children's hospital had said that my son had one of the worst cases they had even seen. The only thing that helped his stomach pain was morphine. This all started with a swollen ankle; the very next day the rashes appeared, then the severe abdominal pain. We were in and out of hospital for a month and was told when the rashes went away he would more than likely never get it again. Wrong! This has affected his kidneys. The very next year he was hospitalized again because a sinus infection started the disease up. He is 9 now and we are still battling through it. He can't get rid of any infection that he gets and I'm trying to find a cure for this baby. It's not fair to him and I would love to find a doctor that can help, so my next step is going to the blood doctor and try some new medication they have now.

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Comment from: Talei, 13-18 Female (Caregiver) Published: October 29

Henoch-Schonlein purpura (HSP) is awful and I reckon it is about 2 years that my daughter will have had HSP! She got it at 11 and is now 13, and protein is high and the rash is just as bad as the first day she got it.

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Comment from: sandra, 3-6 Female (Caregiver) Published: November 06

I am a mother of a 5 year old girl who on the 2nd October 2013 was diagnosed with this nasty horrible HSP (Henoch-Schonlein purpura). I cannot write into words how upset I am seeing my daughter roll around and cry in agony with stomach pains. The rash hasn't bothered her at all, just these nasty stomach cramps. She is losing protein and blood in her urine, she has lost loads of weight and keeps asking me how much longer she is going to feel like this. I wish I had an answer for her. she has had so many blood tests, been in hospital a week with high blood pressure and on a drip; she still has high blood pressure and stomach pains to this day 2nd November. I keep upsetting myself as I want her back to her normal self.

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