Pat
I was diagnosed with HSP at age thirty. This is not just a child's disease as the doctors will often tell you. Fortunately, as an adult, I am better able to explain the symptoms and manage the medication and pain myself. I have occasional outbreaks including stomach pain, the capillaritis on the legs and arms, inflammation of the chest wall, headaches, joint pain and generally feeling ill during the outbreak. Also, fortunately, my last outbreak was about ten years ago but, unfortunately, I am in the process of an outbreak right now. I guess the only reason I am responding to this relatively small group of people looking for information, is to let you know how little there is known about this disease. There are few doctors who have knowledge of it and your lucky if you find a good rheumatogolist who is familiar with it. It took ten years and more tests than I care to think about for me to be diagnosed. My understanding of the disease from my own research is that it is not usually life threatening. The seriousness of the disease is the involvement of the patient's kidneys. It is chronic, which means it can reoccur. It is believed that it can be triggered by an improper response of the patient's own immune system to a virus, bacteria or even a response to various medications. Basically, it's a pain in the neck (or stomach or legs I guess I should say). Good luck. Be patient with your little ones. Believe me they're not exaggerating when they said they hurt. My own experience with the rash is that it does hurt and sometimes itch when it first develops. Topical anti-itch medication does sometimes help. Also the use of anti-inflammatories also helps. Of course, most importantly, find a doctor who is willing to listen and learn or one that is already knowledgeable about this. I've found they're far and in between.