Henoch-Schonlein Purpura - Experience

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What is Henoch-Schonlein purpura (HSP)?

Henoch-Schonlein purpura (HSP) is a form of blood vessel inflammation or vasculitis. There are many different conditions that feature vasculitis. Each of the forms of vasculitis tends to involve certain characteristic blood vessels. HSP affects the small vessels called capillaries in the skin and frequently the kidneys. HSP results in a purplish skin rash (most prominent over the buttocks and behind the lower extremities) associated with joint inflammation (arthritis) and sometimes cramping pain in the abdomen. Henoch-Schonlein purpura is also referred to as anaphylactoid purpura.

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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: 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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