suffering with HSP

I was diagnosed with henoch-schonlein purpura (HSP) in March 2014.  It started off with little red spots appearing on my legs and tummy, and with working in a nursery I assumed it was just chicken pox.  The next day I went to see my local GP to be told it was just an allergic reaction and was given hydrocortisone cream and anti-histamines to take to relief the itch.  By the time I got home from the GP the rash was now, everywhere! And putting the cream on it felt like my skin was literally on fire! Come that night my knees and ankles were swollen and all my joints were in agony! I returned to the GP the following day who then sent me to the local A&E to get bloods checked.  I was then admitted to the hospital overnight where I seen Dermatology and the Renal unit as there were abnormalities with my Kidney Function in my blood tests and Dermatology performed a biopsy to get a definite diagnosis of HSP.  I was then discharged with loads of lotions and potions for my skin and told I would be fine within a week.  2 days after being discharged I started being sick constantly, I couldn’t even hold down a sip of water and I had an excruciating pain in my stomach! I ended up back in the hospital, this time with abnormalities in my liver and my rash began to turn into open sores which meant I had to be put on steroids to take down the inflammation on the skin and to help with my liver.  After a week of being in the hospital I got discharged again, even though I was still being sick and couldn’t hold a thing down! After only just a day of being at home, things seemed to go from bad to worse! I literally could not move with the pain in my back and abdomen, and was still being sick, so I got taken up to the hospital again.  This time, I was admitted to a surgical ward as they thought it could be ‘intercusseption’ which apparently is pretty common in HSP.  With HSP being more common in children, nobody was able to give myself or my parents any answers as to when this was all going to stop, it was a nightmare! My mum ended up getting more information from sites like this, than from the doctors! At this point we came to realise we were just going to have to take it as it comes and deal with things as they cropped up.  On further investigation by the Surgical team from this hospital admission they realised I had inflammation of the small bowel and pancreatitis which explained why I was in so much pain! As everything on the inside was getting worse, so was everything on the outside! My hands began to swell to the extent  of I couldn’t even pick up tablets to take them and I struggled to walk my ankles had swollen so much! The rash also got worse and I ended up having to wear bandages everywhere and was basically, well, mummified! With my bowel being inflamed, it caused me to bleed, a lot! One minute id be fine and the next id be covered in blood, jammies, bedsheets, the lot! For an 18 year old, this was pretty hard to deal with, I felt like I was a fit and healthy teenager trapped inside an elderly persons body, I was just so weak and couldn’t do anything for myself! This went on for 2 weeks straight, and the pain was unbearable, morphine was definitely a life saver!  Things finally settled down and I was able to eat again and eventually got discharged.  However, this was far from the end! At an outpatients appointment to the Renal Unit we discovered my protein levels were up at 250 instead of being between 30 and 50 and my blood was sitting at 3+++  in my urine! I got started on a higher dose of steroids as they assumed it was just inflammation of my kidneys and hoped for the best.  2 months on and I am still on steroids and have lasting scars on my legs, so much so I refuse to wear my little dresses and shorts for going out in the sun! I am still unable to work as the steroids suppress the immune system even more and I am still in a lot of pain with the lasting problems with my kidneys! I have written my story as I felt that when I was dealing with everything, nobody, not even doctors had the answers as to what was going to go wrong next, simply because HSP isn’t common in Adults.  I hope this story helps and gives someone the guidance that I didn’t really have while I was ill.  

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