Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Chis, 7-12 Female (Caregiver) Published: April 08

My son has been diagnosed with Henoch-Schonlein purpura (HSP) from the age of 7. He broke out in rash/bruising. My pediatrician was amazing and knew exactly what is was. It went away after a few days, but seems to rear itself every time his immune system is weak! It has been well over a year and I have seen my pediatrician monthly with urine tests and the specialist twice with blood tests. I am fortunate to say that he has no symptoms other than the rash, although the rash gets worse sporadically. I worry everyday but hope that I trust my doctors enough! They suspect that for my son this HSP will continue for quite some time and it seems to be a memory issue with his antibodies, meaning that his immune system believes this is how it is supposed to work to fight off illness! I'm told that he needs quite a bit of time with no HSP for this to go away. That is unfortunate as my son is 3rd grade and kids get sick way too often. Very little information on non-symptomatic HSP and has lasted so long.

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Comment from: Jen, Female (Patient) Published: December 16

I was 2 years old when I was diagnosed with Henoch-Schonlein purpura (HSP). I was hospitalized because of my young age and the severity of my case. A group of medical students drove 75 miles to observe me, as my case was one of the youngest they'd seen my part of the county. I surprised my mom as a teenager when I told her I remembered my hospitalization. I recalled the nightgown I wore, and a Disney pop-up toy, the hospital gave me. Pluto or Goofy was broken and wouldn't pop up. I recall my 2 year-old-like frustration. My mom does not recall exactly what medications I was given, but I suspect I was treated with steroids. She recalls them asking her to think carefully about the treatment proposed, as there was a chance it would leave me sterile. I have four healthy little boys, so no worries there!

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Comment from: Jan, 55-64 Female (Patient) Published: December 05

I was diagnosed with Henoch-Schonlein purpura (HSP) when I was 14 years old in 1964. My symptoms were a strep throat, a very high temperature of 105.6. I had total renal failure, purpuric rash, I bled into most of my joints, and I had vomiting. I also developed bacterial meningitis, and they had found minute bleeding around the lining of my brain. By the time I was admitted I was unable to breathe on my own or move any of my limbs. At first they thought I had diphtheria or polio till one doctor recognized the symptoms of HSP. I was left with scarring to both kidneys, and massive allergies to many drugs including aspirin, penicillin, and most opiates (as in those used to manage pain). I also developed chronic asthma and osteoarthritis in my hands, knees and elbows. After a second attack when I was 20 in 1970 one kidney stopped working and the other is only functioning at 75 percent. I had frequent kidney infections and then became allergic to any drug with sulphonamides in them. On the up side I am 64 years old, yes I have a lot of side effects left from this disease but none that aren't livable with. Just a case of taking good care of myself. I have run 14 half marathons, skydived, go rock climbing and I walk well over 4 miles a day.

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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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