Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Wil, 55-64 Male (Patient) Published: June 25

When I was nine years old I had my first bout with HSP. I had pulled up my pant leg to scratch an itch when my mother noticed the bright red dots on my leg, at first she thought I had colored on my leg with paint or something. After a further look at my legs she decided I hadn't. It started at my waist and went to my feet. At first there were no symptoms, but after a few hours waiting in a Military Hospital I was unable to bend my knees or walk forward, I could walk backwards, which I thought was funny, Mom did not. I was admitted to the children's ward (about twenty or so kids all in one big room) that night. I spent ten days in the hospital, two before being diagnosed with HSP, at the time they thought it was a reaction to penicillin, which I had been given a couple of weeks prior because of strep throat. I was the talk of the ward because of the HSP (I think every doctor in the hospital had a look at me) and because I had blood drawn twice a day( that impressed the rest of the kids because I let them do it without any fuss, no screaming or crying). It resolved it's self without treatment. They took photos of my legs everyday and said that someday they might be in a text book, so far none of the photos I have seen look like my legs. Since then I've never had penicillin, but have had two more bouts of HSP, one at age 35 and another when I was 41, never was able to determine a cause either time. Symptoms then were the rash but this time joint pain, abdominal pain, and blood in my urine. So far 15 years later have not had another episode, and have had no lasting problems.

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Comment from: hspsucks, 13-18 Female (Patient) Published: April 24

I am 15 years old. Last year, I started getting back pains around my kidneys. Shortly after, I started getting these little red spots all over my legs. About a week later, I got food poisoning that lasted longer than it should have. I went to the doctor and at first they thought it was a UTI. After a week of being unable to even hold down water, I became very dehydrated and ended up in the hospital. Finally, I was diagnosed with HSP. I couldn't eat for the next week, and had unbearable stomach pains that had to be treated with morphine. I lost 20 pounds in two weeks and was not rid of HSP for two more months. I have scars from the spots all over my legs, and I still have stomach problems.

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Comment from: 7-12 Female (Caregiver) Published: January 16

Both of my daughters had HSP when they were 6 and 7 years old. It started as what looked like small insect bites on their legs, then developed into large bruises. Their knees and ankles swelled, ran high fevers, were nauseated and generally very sick. The doctors said it was viral and was not contagious. My oldest got it first, and two weeks later, the younger one came down with it. They couldn't explain it, and still don't know what caused both of them to contract it.

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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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