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I'm 17 years old. I got diagnosed with hsp in November after developing a rash on my leg. I've had it for almost a year and it just won't go. I had a tough tough time of it, from the rash everywhere, joint pain so bad in a wheelchair and then crutches, urinating Nothing but pure blood and being so weak to even move I started to get better and things were looking so bright for me. I had missed a 5 months of school while being off so unwell therefore I failed to sit my exams and my hopes of going on to study in university were shattered, I got accepted to study my higher subjects at college and I was so so excited, it was a second chance, my time to shine. 6 weeks ago, my regular app at the renal clinic showed bloods that were the worst my consultant had ever saw in me and after trying almost every other medication he said a type of chemotherapy was our next step after a renal biopsy. I've been in so much pain, so much. My kidneys ache every single day to the point I just don't wanna do anything, I can't. Some days I'm so weak I sleep for 15 hours and I'm still shattered. My body swells for example eye lids and hands and it's hard to see some days and hard to just carry on normal. I constantly go to my doctors in pain and bloods showing all sorts of things wrong with my kidneys, I just feel like they don't know what to do and have no clue. My whole teenage life has been destroyed for me and I have to watch my friends enjoying their holidays together and parties while I'm stuck at home. It's for the best but very hard to accept. My weight is also an issue, im not underweight but I really could do with putting a few pounds on any advice on that would be so so helpful to me. I feel so guilty at times seeing so many people worse off than me but I just don't think anyone knows how draining and painful this disease really is if it hits you hard. I just want some positivity. I want there to be a light at the end of this tunnel, please any advice would help. Thank you so much in advance x
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