Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: 5121, 25-34 Female (Patient) Published: August 26

I was diagnosed with HSP in 2005 at 23 years old. I had the speckle rash and extremely swollen ankles. The vessels of my eyes would also spontaneously burst, making the whites of my eyes a scary red color. I have found that if I cut out certain things from my diet, especially beer and wheat products, my condition improved immensely. Hydration also played a role. I feel sometimes that HSP is confused with celiac disease. As long as I try and keep flour and wheat out, I feel better. I still have lingering speckles on my feet and ankle bruising, but it is far better than before.

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Comment from: Lisa, 25-34 Female (Patient) Published: August 26

I am 25 years old, and I got the rash on my lower legs, ankles, toes and the arch of my feet. This happened two weeks after a viral throat infection. I then had very bad joint swelling and pain in all joints. My Henoch-Schonlein purpura put me in hospital for four days. I received lots of tests and a skin biopsy. The rash on my legs blistered and have now are scared. I am on prednisolone. It has been almost three months, and I am still having outbreaks if I do anything that puts my body under pressure, such as rushing about.

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Comment from: Graciemae, 25-34 Female (Patient) Published: August 12

I was diagnosed with HSP just over two months ago. I am 34 years old and it started with the rash on my legs. It took my doctor about three weeks to diagnose me. I have had several outbreaks of the rash since then. I have not had any of the joint inflammation or the stomach pains. To my knowledge, my kidneys have not been affected either. I have now been off my medication for just over a week and my rash seems to have completely subsided and hopefully will not return.

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Comment from: Martha, 19-24 Male (Caregiver) Published: August 08

My oldest son had HSP at age 11. He was hospitalized for more than two weeks and suffered at home for another five. It was the scariest time as a parent I have ever gone through, and it took doctors four days to diagnosis him. We didn't get any accurate information until he had been transferred to Children's Hospital. He is now almost 21 and is still having abdominal problems. I have tried to get information from the medical profession regarding residual effects from this to no avail. It is a rare autoimmune disorder, and they never did find the cause, so my worry continues.

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Comment from: Toni J, 45-54 Male (Caregiver) Published: August 05

My brother has had henoch-schonlein purpura for two weeks. This is the sickest I've ever seen anyone. He started with a rash, swelling joints, swollen eyelids, and now severe intestinal problems, vomiting and blood in diarrhea. He has extreme weakness and joint and back pain. The doctor did not recommend hospitalization, but I think he should be in the hospital — at least to get some fluids.

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Comment from: 3-6 Male (Caregiver) Published: September 25

My son has just been told he has henoch-schonlein purpura (HSP), he is 5. Although he has not had much swelling and tummy pains, I cant help but think this will happen soon. We have just been told today and he has just been discharged from hospital. He has the rash and I did think it was meningitis which was really scary. So I am not sure if he will get the swelling or not. I really hope not, although he has been complaining his ankles are sore. I really sympathize with you all because it is a worrying time.

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Comment from: 3-6 Male (Caregiver) Published: September 10

My 3 year old recently got Henoch-Schonlein Purpura. And it is the scariest thing I have ever experienced. He has strep and then all of a sudden bumps started appearing all over his legs and buttocks. At first they looked like bug bites or chicken pox. I took him to the ER and they told me he had HSP. We are still going through the very large purple spots they are now moving to his elbows. They are about the size of a quarter now. Thank God, we have not experienced joint pain or abdominal pain.

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Comment from: Kristen, 7-12 Male (Caregiver) Published: August 28

My nephew is 8 years old and has just come down with HSP. He has a rash, and he is swollen in his private areas. I have not seen or read anything about swelling in those areas.

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Henoch-Schonlein Purpura - Symptoms Question: What were the symptoms of your Henoch-Schonlein purpura?

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