Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

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: trystal27, 7-12 Female (Caregiver) Published: July 12

My daughter was 6 years old when she first got hsp. It was Christmas morning, she started with severe belly pains vomiting up blood, and her whole legs was covered with the red rash, so I took her to the emergency room, and none of the doctors knew nothing about it, so she was rushed to a different hospital, she had a fever of 105,she was wheel chair bound for a couple of months, she had a kidney biopsy because of it, and she has arthritis, and she have to take medicine everyday so it won't flare back up. Occasionally she has flare ups, and they just have to up her dose in her steroids. It's been almost 2 years since she had it, and now she just has stomach pains and arthritis because of it. She goes to a kidney doctor and arthritis doctor regularly and has physical therapy so hopefully she will fully recover from it.

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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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Comment from: Jules42, 35-44 Female (Patient) Published: March 08

I am a 43 year old female who has recently been diagnosed with HSP. It started with a general feeling of being unwell with a sore throat. Approx 5 small spots appeared on my lower legs and by the end of the day I was covered to my waist in a rash. I also had extreme pain in my knee joint and swollen hand. After 3 days the rash increased with very large lumps also appearing at top of my legs and waist the joint pain moved to my feet also and I was unable to walk. I was admitted to hospital where I had many blood and urine tests a skin biopsy, chest x-rays etc. I have blood and protein in my water still 6 weeks later and have recently had a kidney scan with talk of doing a kidney biopsy. I am still feeling unwell, extremely tired, still have rash although it has faded and looks like bruising. I continue to have pain in my joints and kidneys. Under specialists for rheumatology, dermatology and renal. If I can help anyone to share experiences.

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