Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Sherry L, 35-44 Female (Caregiver) Published: September 26

My brother and I were seven when he came down with henoch-schonlein purpura (HSP). It was over 30 years ago and at that time, no one really knew what it was. The "rash" from his waist down looked like perfect round bruises with a red dot in the middle. The first hospital my parents took him to actually called child services because they thought he was being abused. Our family doctor knew better and suggested they take him to the children's hospital run by University. One doctor there knew what it was. There had only been two or three cases in the United States reported by this time. They thought HSP was a blood disease, but did not know how it occurred or how to fix it. It was a very long two weeks in the hospital, taking blood every few hours, and constantly checking his vitals. He was given a lot of steroids and antibiotics. He gained about 30 lbs. which took almost two years to get rid of. He's been okay ever since. The medical center used his case as study for over 20 years with all new interns.

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Published: September 25

My daughter was diagnosed with henoch-schonlein purpura (HSP) when she was in kindergarten. Her pediatrician didn't even know what she had. When I took her to the ER because she was in so much pain and her knees and ankles were so swollen, a medical resident recognized it right away. What is interesting is that I was told that this does not run in families, but my husband's brother's son was diagnosed with it when he was 13 and it caused kidney damage requiring a kidney transplant when he was 16, he is 41 now. He spoke with his doctor when we found out about my daughter and he was very surprised. We had to watch her kidney function for about a year and she did well. The only thing I think she still has from the Vasculitis is trouble with her ankles when she does a lot of walking. For the longest time she would tell me it felt like someone was banging on them. She is 13 now and doing well.

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Comment from: klm, 7-12 Female (Patient) Published: September 05

I had HSP when I was in grade school, and I was so weak, I couldn't even hold a water bottle. I had the rashes on my legs, stomach aches and my lower back where my kidneys hurt. What was very odd was that considering this virus is so rare, one other girl in my grade had it at the exact time that I did, and I have wondered if there was something in the environment that triggered it with both of us. Overall, my experience was really interesting, and I am aware of this for myself and others in the future.

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Comment from: ayeup, 19-24 Male (Patient) Published: September 05

I was diagnosed with this henoch-schonlein purpura when I was 18, so about six years ago now. It was in the autumn months, which is when it is more prevalent. I initially suffered from a viral infection. Later that week, I developed pains in my abdominal area, and then came down with the meningitis-like rash. I was in the hospital for three weeks. All the symptoms described, I have had. However, I am or was one of the few who got renal failure as a result. It is believed to be chronic and not end stage. However, I am on continuing medication as a result. The thing I have found as a result of my diagnosis, is that I can't eat spicy food or red meat. My metabolism has slowed to a point that I am more prone to putting on weight than I used to be. This is one of those diseases that puzzle even the most genius of specialists. Bar the diet, I still get to live a relatively normal life.

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Comment from: Lex Diamond, 19-24 Female (Patient) Published: August 28

I remember being diagnosed with this virus when I was about 6 or 7 years old. I'm 21 now. It was quite painful, and my legs had huge circles of broken blood vessels that swelled to the surface of my legs. I couldn't walk for almost three weeks and was hospitalized to be monitored. The swelling and arthritis became such a problem, it ended up fracturing one of the bones in my ankles. I had to be in a cast for a while. It passed, and I never had it again, but I remember it wasn't a very good experience as a child. It's probably the most serious thing that has ever happened to me this far, thank God!

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Comment from: Ruby, 3-6 Female (Caregiver) Published: August 28

My child was 3 years old when she got Henoch-schonlein purpura. She has always had a high pain tolerance, and when she was in the ER, her feet and hands were swollen to the max and you couldn't even touch her without her yelling. I was scared. Even the doctor that had treated her was scared. She got transferred to a bigger hospital with a pediatric staff. She has never been sick. Now she has this. The rash came two days after her swollen joints and the pain.

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