(20/M/Canada)
So here's a quick summary of my experience
I have always been very active when it comes to exercises and sports. During the winter and spring of 2007, when I was 18, I had been training 5 days a week for track (sprints). On top of that, eating completely healthy and watching my diet. My point being, I was probably the healthiest kid on the block. Then during the summer I began getting joint pains in the knees and feet and eventually stomach pains. Everytime I went into the clinic or emergency they said it was a bad case of the flu. Eventually, after a week of not eating, as well as bloating in the hands and rash appearing) they took me in. This is when the nightmare began
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Now to make a long story short I spent a full month in the hospital without eating for close to 3 weeks (hooked me up to many IV's). I had a kidney biopsy done and I was told I was leaking up to 8 grams of protein in my urine. I was put on prednisone for a year, starting with 50mg for the first 6 weeks! I was also, and currently on immuran. My weight dropped from 175 to 139 during the 4 weeks from the initial appearance. After the hospital I was so sick and weak that everything became very depressing and hard. I spent the next few months recovering and atleast 4 months dealing with stiff knees from what I suppose is one of the side effects after the disease. I couldn't do many daily activities, such as even going to mall, because I couldnt walk with my knees. Now, this is certainly not fun for a 18 year old, and ofcourse anyone.
It took about 10 months for me to finally feel like myself again, also being that I was almost off of the prednisone.
I am 20 now and it has been a year and 6 months since the initial attack. My prognoses on my kidneys has moved from a chronic kidney diseased state ( starting form 8 grams of protein leakage) to almost 100% normal kidney function and leaking minimal protein. I am still on immuran for medication and ramipril to lower blood pressure. Since I have been sick, I have always had rash reoccurences. In fact, as I am typing this I notice a small flare up on my forearms (where it normally occurs). Besides these few issues, I am perfectly healthy again and I am doing everything I was doing before (back to weight-lifting and track). I am still a bit self-conscience about the small flare ups since I have to cover it up from time to time.
I believe that the prayers and comfort from family has gotten me through this. Am I a little worried it may occur again? Ofcourse, but I do not think about it and also I am sure they can prevent some of the damage it does the second time ( knowing that they know what I have right away ).
They told me that I had a very bad case of HSP, but not the worst out there. Now there's my experience and if anyone needs some support, or would like to know more about how I dealt with my experience please feel free to leave me a message.