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Posted , 5 users are following.

beth92856
beth92856

Hi everyone. I’m 18 years old. I was diagnosed with henoch schunlein purpura in October 16. I had the rash extremely bad, swollen joints and the generally feeling of weakness etc. All the signs of HSP! The hospital were quick to diagnose me and gave me medication of antibiotics to help which absolute DIDNT work. Doctors were certain it had worked and sent me home from hospital and after many returns to my doctors they realised maybe it hadn’t gone and kept me on antibiotics. I fought and fought so so hard to tell them these antibiotics were not working and they ignored, I started to get signs of organ damage and especially kidney through urine and blood tests they thought it had started to attack my kidneys but further and different ANTIBIOTICS given which I fought so hard AGAIN that didn’t work, I demanded a biopsy, where we found out I had IgA nephropathy where they found out I have chronic kidney disease and have little to no function left, I was given steroids and a whole different types of treatments such as some cycotoxan! I’ve spent endless days and nights in hospital I’ve suffered more than I could ever imagine and my kidneys are almost totally done with me. I am urging you all to fight! Don’t let it get to the stage I’m at! Listen to your body! Don’t let professionals belittle your disease and get a medication that WORKS for YOU! I’ve been Mis treated with medications for so long that it’s to late now for me, please don’t let it be too late for any of you! I hope you are all coping as well as you can! 

1 like, 8 replies

8 Replies

  • brittany08747
    brittany08747 beth92856

    Posted

    THIS breaks my heart for you! I’m so sorry you have been through this. Everything you read online makes it sound like this disease is nothing. Give it 4 to 6 weeks and it’s gone. WRONG!!!!! Doctors pass it off as much less serious than it is. It is terrible. Horrible. An absolute nightmare. I will pray for you and others!!! Stay strong, Beth. Please keep fighting.
  • margie00532
    margie00532 beth92856

    Posted

    Sorry to hear of your difficult experience and lack of response from your Doctor's. It is not fun going through the trial and error of the medical process. I thank you for sharing it, and your wise suggestions. I hope you find some relief and good care very soon. 

  • Cinders68
    Cinders68 beth92856

    Posted

    Hi Beth so sorry to read your post. GOSH have been no better@ my 16 year old was diagnosed correctly in Sept 15 and through lack of care and understanding she has 5% Kidney Function. Through diet she is trying to stay of dialysis but it's a loosing battle. Her main hope will be the electronic kidney soon to be trailed in USA.

    If only we could all chat and meet up maybe the medical profession would realise there is more than one case out there.

    We have been told my daughter is the first one in 10 years to get this bad.

    Birmingham children's hospital had a 17 year old who went this way and had a transplant. Heaven knows if he's still alive.

    Wishing you all the best.

  • melissa85033
    melissa85033 beth92856

    Posted

    So sorry to hear about your kidneys!! I’ve started the rash December 19th and have gone to my GP once, hospital once and now a dermatologist and still haven’t started any meds yet.... hospital thinks it’s HSP and the dermatologist thinks that as well. I have to Wait for Blood Work I did yesterday to get some real answers.... my rash is pretty nasty on my left hand and hurts quite bad. Do you have suggestions on what meds have helped you so far?? Or creams? 
    • margie00532
      margie00532 melissa85033

      Posted

      Hi Melissa, by chance are you in Canada? I ask because you said GP. Either way, I am. I've read that HSP is affected/flared by cold temps and our winter's can be chilly.  Hope you gain relief.

    • melissa85033
      melissa85033 margie00532

      Posted

      Hi Margie, I’m in England. We have had occasional cold snaps but not anything unbearable. I’ve been staying indoors a lot since getting this. I’m 38 and I’ve never had anything weird like this ever! 
    • margie00532
      margie00532 melissa85033

      Posted

      We were just in England for a few weeks, coincidentally 2 months prior to my coming down with this. We ❤️ the UK. Are there many resources and much in the way of support there?
    • melissa85033
      melissa85033 margie00532

      Posted

      Oh fabulous!! We are American living over here for work. I’m about 2 hours north of London, lots of country and farm life around me. Not sure about the support part,  just started this journey a few weeks ago so I’m quite new to all of this. 
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