Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: Gavinsmom05, 35-44 Female (Caregiver) Published: November 16

My son is 6 years old. He came home from school with both his ankles swollen and red dots all over both legs. We thought he had been bitten and was having an allergic reaction. The next day his wrists started swelling and the rash of red dots had spread. He was having difficulty walking. We immediately went to the pediatrician and they diagnosed him with HSP. His penis, ears, ankles, wrists, knees, and fingers swelled up. He has had hard knots on his scalp, groin, and calves. He has the huge red spots all over his legs and buttocks. We are on day 6 and he has had a second wave of rash which now looks like raised bug bites. I can only pray that this will be over soon!

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Comment from: jackson, Male Published: October 26

My case of Henoch-Schonlein purpura (HSP) was more serious than what was described. I have had it for seven years, and I am now 14. I had to have a couple of operations and take steroids and another drug for six years. The side effects made things difficult for me. I let out lots of protein and saw a specialist. The doctor said that it is as if there is a hole in my kidneys, and all of my protein is leaving my body. Sometimes I saw blood when I urinated! (I'm male.) It was very stressful, and I am going for another check-up in six months. Wish me luck!

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Comment from: Mum, 3-6 Female (Caregiver) Published: September 15

My daughter had this disorder when she was 6 years old and I would have to sit behind her in bed and she in a maternity pillow in front of me (her between my legs in a sitting position) and I would have to rub her stomach in a circular motion about every twenty minutes for about 2 or 3 weeks. She slept no longer than about twenty minutes at a time because of the cramps in her stomach.

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Comment from: tashac., 13-18 Female (Patient) Published: July 29

I'm 16 and I was diagnosed with HSP at the age of 9. A few weeks before I was diagnosed, I started feeling really stiff and every morning, I couldn't get out of bed. My back was so painful, I could barely move and I would have to struggle and roll off of my bed, to hit the floor. One morning, the morning it was the worst, I could barely move at all, I felt really ill and had severe abdomen pain and I came up in a rash all over. There wasn't anywhere where there wasn't a spot. My mum booked an emergency doctors appointment. There were no available doctors, so we saw a nurse who had no idea what was happening, and had to pull a doctor out of a meeting to get me a second look. They first thought it was meningitis. I was taken to hospital and spent the day there. At the hospital, I had loads of blood tests, urine tests, and many others. It was horrible as I had no idea what was happening to me and no one was telling me anything - it was only years later that my parents explained so I understood. It took weeks for me to actually be diagnosed and meantime they gave me a really gross medicine, but once they had found out it was HSP, I had to go onto another medicine which wasn't as bad! I still get stiff now but I'm ok.

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Comment from: HSPMom, 25-34 Female (Caregiver) Published: May 13

Our daughter was first afflicted with HSP at age 6. She had bloody stools, vomiting and abdominal pain along with headaches and joint pain. The rash showed up after the first symptoms. We nearly lost her when the seizures started. She was treated with steroids and anti-convulsants and at one point stopped breathing. She was on steroids for months and had to have a home teacher for her first grade year. We thought that it was all over and she was generally healthy for about a decade. Then it gradually became clear that her immune system does not function correctly and that her immunoglobulin is not as it should be. She suffered with constant infections and took tons of antibiotics but problems always recurred. She is now on monthly IVIG treatments that sort of keep the infections at bay.

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Comment from: couge, 3-6 Male (Caregiver) Published: March 08

My son (4 years) was diagnosed with Hsp at the start of this year, it started with a sore swollen wrist then ankle and then his legs got covered in spots all within about 10 minutes of each other. I also have a daughter who has ITP, so wasn't going to muck around with it, I took him into the doctor who told me what he had. He then took blood tests and urine samples which showed protein in his urine. Since then I have been in and out of hospital 4 times in 2 months, waiting for some answers, Still waiting, he is booked in on Friday for a kidney biopsy so hopefully we'll get some then. He also was peeing bright red as if it was straight blood, and continued to get more and more spots, his genitals also swelled and went very purple (not sore), but very scary, these days when he gets home from school and all he can do is sit on a chair and watch tv, he's to sore to move.

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