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Hey, so I wanted to write this post addressing anyone who is currently suffering from HSP especially people who have been diagnosed later in life as I know how much of a painful, lonely, isolating experience it can be. I've had HSP for over two years now and it still persists but it has diminished a lot, thankfully.
I was diagnosed not long after my 20th birthday, at first the rash appeared and I panicked because I thought it resembled meningitis, and around that time students were dying from a particular strain of meningitis so I was quite alarmed. When I was diagnosed with HSP I really thought nothing of it, I had never heard of it before and I was just happy I didn't have meningitis, as well as the fact that the doctor told me that kids primarily get the disease and it disappears over the course of a few weeks. I was honestly only annoyed that I couldn't go clubbing for a few weeks. That attitude quickly went away when my legs went purple and I could barely walk, a few days later I was up all night with intense abdominal pains and ended up in hospital back at home away from uni.
Over the course of my little stint in hospital I had the multiple different scans and tests and endured the worst pain I hope I will ever experience. Morphine couldn't touch it. Despite that I know I'm one of the luckier ones as HSP can develop many horrible symptoms some of which can massively reduce the quality of life. Anybody suffering from HSP you honestly have my deepest sympathy because I know just how physically, mentally and emotionally painful not only the disease itself is, but also the side effects of the many medications you have to take, as well as the huge changes you need to make to your life to adjust to having the disease and how you just generally feel like you're sleepwalking through your life.
If there's one piece of advice I can offer it is never take what any doctor, gp, etc. says on face value, as harsh as it sounds you are ultimately just a number to them, there are many cases like you and you are not treated like an individual person, just a problem for them to remedy in the cheapest easiest way possible, not necessarily the most effective. The only reason I managed to be treated with the medication I believed would be the most beneficial to me personally is because I searched for it. I looked for clinical trials or specialists across the country. Ultimately this is worth traveling for, it's your life at the end of the day. Contrary to what I've just said there are some wonderful specialists and doctors out there who will give you the time of day but it's more than likely you'll have to reach out to them. I got lucky and ended up finding a specialist near by who was connected to the university I was attending prior to my diagnosis.
Two years on I do really feel better, I still have to contend with the rash every now and again but it's only really bad when I drink, fortunately my medication prevents it from happening that much. But most days I don't take any medication whatsoever anymore. HSP is sometimes a constant consideration I have to be concerned about when doing certain things...namely drinking. But other than that please take this post as just a little bit of a hope that things truly can get better, I really didn't believe at all during the initial stages but they really can get better. I used to use these forums to find any info I could so I thought I should probably at least post this to offer a bit of a light at the end of the tunnel for anyone else.
Anyone suffering you really do have my best wishes and deepest sympathies. I am going to check on this post from time to time and respond to any questions if anybody has any. Honestly things can get better, keep your chin up.
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