Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

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: 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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Comment from: Christian, 19-24 Male (Patient) Published: October 31

I was diagnosed with this when I was young, about 10 years old or so. I am now 23 and anytime I have a cold or virus I seem to get the very mild rash, not bumps just purple "spots" as my wife calls it on my feet and legs. I have been encouraged to have my blood drawn occasionally to check my kidneys. There is no apparent damage, I'm just wondering what others do.

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Comment from: GG, 3-6 Female (Caregiver) Published: May 17

My granddaughter is entering her 10th week of this terrible affliction called henoch-schonlein purpura. She is 6 years old and has constant stomachaches. Each time she has one good day, the cycle starts again. She has swollen and painful joints, severe stomach pain, and then a rash, which gets larger and covers more and more of her body, even on her face, ears, and in her mouth. There seems to be no end to her pain. The doctors do nothing for her and just suggest waiting it out. I give her Tylenol and Motrin for pain, but worry about even that damaging her stomach. I feel so helpless. She can't eat, and lost 8 pounds the first month. We took her into emergency twice, and the second time, the doctor didn't seem to know what to do and sent us home. When the rash gets so large, I worry about possible internal bleeding. Has anyone found a method of relief for this monster?

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Comment from: marcus, 25-34 Male (Patient) Published: February 26

I had Henoch-Schonlein purpura when I was 7 now I'm 25! My infection lasted for months and it led to kidney failure! I'm on medication still but I'm fit and well! I went through it all!

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