Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: Dee, 35-44 Female (Patient) Published: February 04

I was diagnosed with Henoch-Schonlein purpura when I was 5 an am now in my 40s. We didn't have Google back then to research purpura like we do now, but I remember growing up, my parents made sure it was part of my health history. I had a severe case and my parents almost lost me. I lost a ton of weight and remember not being able to stand and nurses trying to get me to stand on a scale in the hospital. I remember ice baths for a high 105 temperature. The rash had spread from the tips of my toes to the roof of my mouth and the doctors had told my parents that if it went to my eyes I could go blind and to hope that it didn't go to my brain. Miraculously I recovered and have had no recurrences fortunately.

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Comment from: 13-18 Female (Caregiver) Published: August 16

My daughter was diagnosed with HSP when she was about 2 years old. She's been sick off and on during the winter with vomiting/diarrhea. She was on her potty chair one morning and said her knees hurt. I didn't really see anything unusual but they progressively became more painful and by evening they were very swollen, warm to touch and she was unable to walk. When my husband arrived home from work her ankles and elbows were swollen as well. By the time we arrived at the ER that evening the purpura began and continue to worsen throughout the evening. The ER doc. loosely diagnosed her with possible juvenile rheumatoid arthritis and told us to follow up with pediatrician. We took her to pediatrician the next day. Our pediatrician was pretty confident it was HSP as soon as he saw her and after getting a urine sample and some blood work he diagnosed her with it. She did have kidney involvement. She was put on steroids as well as a narcotic pain med. The pain swelling and purpura subsided in about two weeks she continued to have blood in her urine for about two months. She is 13 now and has started having purpura around her eyes, her earlobes and sometimes on extremities. I have an appointment set with her pediatrician so hopefully we can make sure all is well soon.

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Comment from: Mandy, 13-18 Female (Caregiver) Published: April 16

My son was 14 years old when he got Henoch-Schonlein purpura (HSP) and admitted into hospital, where the doctors didn"t have a clue to his condition. After treating him with the wrong antibiotics for 2 weeks they transferred him to another hospital. HPS had caused vasculitis, which had inflamed his kidneys, and his kidneys deteriorated. At 18 years of age he was put on kidney dialysis, then in September 2008 he had to undergo a kidney transplant, now in 2014 my son is 24 and is doing great. It just makes me still feel very angry that if he had been diagnosed and treated correctly he would never have had to suffer all the pain he went through.

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Comment from: Samia, 3-6 Female (Caregiver) Published: April 11

My 6 1/2 year old 2nd daughter has been suffering with Henoch-Schonlein purpura (HSP) for over 4 years now she is one of the rare cases who has it long term. She"s had all sorts of tests done, 2 skin biopsies and is on medication for arthritis. She has monthly blood test is been seen by specialist doctors on a regular basis but there doesn"t seem to be a cure for it .At the moment I am very frustrated because it affects her everyday life a lot and there"s never any information on anyone who"s had it long term. Would appreciate if anyone has had a similar experience would be able to write about it.

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Comment from: BARB, 65-74 Female (Patient) Published: October 08

I was told in 2010 that I have Henoch-Schonlein purpura. On both feet, scabs came on each lesion, when one fell off the next one would happen. Now the scars are there to remind me. My feet are tender and I keep them elevated all the time with a fan 24-7, my toes are numb. I take Gabapentin 3 times a day because they burn. I only leave my house for doctor appointments and I know my feet will hurt and burn for 1-2 days with little relief no matter what I do because I had them down for my office visits. I have learned to live with this.

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Comment from: sam, 3-6 Female (Caregiver) Published: November 18

My daughter is 6 years old and has been suffering from HSP (Henoch-Schonlein purpura) for the past 4 years. She has rheumatoid arthritis and is on medication for it. I wonder if anybody else has had it for so long as it is very rare to have it long term. I am getting to point where I feel I can't cope anymore.

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