Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Marandtell, 3-6 Female (Patient) Published: August 08

When I was really little, about three or four, I had a weird bump in my spine. Later the doctors found out it was HSP. Since HSP is so rare, many people don't know what it is. But I do. It was very scary for my mother. I don't remember much of it. I have some arthritis in my fingers now. I couldn't walk. But I'm luckier than lots of people who get it.

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Comment from: Denielle, 25-34 Female (Patient) Published: July 17

I am 27 and was diagnosed almost 2 months ago with HSP. I started with a small rash similar to bug bites on my ankles then soon became larger, and larger. I didn't have symptoms besides the rash until a month later. Extreme headaches, knee swelling, body aches, and kidney pain. A few weeks have past, most symptoms gone besides the embarrassing rash, considering its summer time and I'm in winter clothing. Reading every post I could the best solutions everyone has said is to avoid sun, take ibuprofen for inflammation including the rash, tons of vit C, avoid wheat especially and flour. No smoking, drinking, or chocolate. Try Epsom salt and oatmeal baths. I hope some of this helps, I'm still working on it my self. Best of luck!***

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Comment from: JC, 55-64 Female (Caregiver) Published: July 02

My father has recently been diagnosed with HSP at the age of 58. He is also ex-military as someone posted that they were as well. He is being treated at a VA hospital in RI. His intestines, and kidneys have been affected severely, probably due in part to a late diagnoses. He was sent away from one hospital, and spent two weeks in another, until symptoms subsided. When symptoms returned he went to the VA, and is now being treated with a mild chemo. He was on steroids, but they were making the stomach issues worse. This has been going on since late April, and he was only diagnosed about three weeks ago. Not only is he on the chemo now, and a new steroid, they also have him following a diet similar to that of a person suffering from Chron's disease.

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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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