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I would absolutely love someone to talk to, as not many people seem to understand what I am going through. It would mean the world to me if any of you would lend an ear!
I am currently an 18 year old female in my senior year of high school. One night (about a month ago), I noticed some red, burning spots on my legs and went into the ER. They told me that it was a common reaction to antibiotics that I had taken for strep throat a week before and sent me home without any medication or further evaluation. I went to school the next day, embarrassed about my rash and hiding under layers of clothing. By the time I had arrived home that evening, my legs, feet and thighs were covered in even more spots that burned immensely. This was also accompanied by very uncomfortable abdominal pain. I called my doctor and he reassured me that it would go away within a week. My mother was furious with the ignorant doctors I had seen and continued to bring me to different clinics that week. I had appointment after appointment and ended up visiting the ER two more times after that, only to be sent home and told that it was just an ordinary rash that had to run it's course. I could not believe it! I had an especially bad experience at a hospital that I drove over an hour to get to, where everyone was very mean to me and told me that I needed to make the best of it although I couldn't even walk through the building. Like I said, it was an absolutely shocking experience.
On top of everything, since I could hardly walk without the rash flaring up and spreading, going to school was absolutely not an option. Since I am supposed to graduate this year, this is all extremely stressful to me. I couldn't see my friends, I was absent all the time, and the school didn't seem to understand why I couldn't make the best of the pain and show up to my classes.
My mom scheduled me an appointment with a rheumatologist but she couldn't see me for a few days. I stayed home and kept my legs elevated until my appointment day came, but within that time, my body became completely covered in red spots with the exception of my head. I personally felt very scared and worried because me and my mom both knew that this was more than any old rash. I'm also not sure if I have expressed enough how moving around at all or touching the spots felt excruciatingly painful. I could hardly eat without getting a terrible stomachache- I was literally worried sick. Worst of all, I felt humiliated and embarrassed, showing up to the ER and then being told to go home because there was no real emergency.
FINALLY, I saw an amazingly understanding specialist who diagnosed me with Henoch-Schönlein Purpura and everything started to make sense. She explained everything to me and proscribed me with some steroids until my next appointment in a few weeks. She told me that I cannot go to school at the time, though, and graduating with my classmates doesn't seem like an option right now. The more I am learning about HSP, the more I get upset and worried that it will never clear up. I have seen people say that they had been in this situation for the past 5 years. I've also seen some who miraculously recovered within a month.
Life with HSP has been physically and emotionally exhausting, but I do I know that there are many people who have it much worse. Those who I explain this condition to sometimes don't understand. When people see my rash they usually get squeamishness and cringe, but I guess I understand it. Being a young girl, I want to wear short sleeves and capris but my skin looks very odd. I also forgot to mention that I lost my appetite... Another thing is that's it's odd to not exercise like I used to. I hate by staying home all the time! I guess my ultimate goal of making this post was to reach out and find out if someone went through the same thing or similar and could give me advice.
How do you deal with HSP? How long have you had it and did it ever go away? Can you go to school, work, shopping, or anywhere? Is there a light at the end of the tunnel? What did the doctors tell you to do? Are you on medication or treatment of any sort?
Even if no one reads this or responds, it was still worth a shot. If you are reading this, I want to say thank you for taking the time out of your day. If you don't have HSP or anything similar, I still appreciate that you read this. It's very weird that doctors don't understand this disease very well. Once again, thank you tremendously for listening to my story!
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