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Are there any Teenagers out there that have HSP, Nephrotic Syndrome and have had a Kidney transplant

Posted , 7 users are following.

Cinders68
Cinders68

My 15 year old daughter was diagnosed in Sept 2015 with HSP. Due to incompetence and lack of knowledge she now has end stage renal failure (seemingly the first one at GOSH in about 10 years) so our consultant and the team have no idea what to do. Just hoping there maybe a Teenager who has had this and Survived HSP, Nephrotic Syndrome and a transplant without HSP coming back to kill the new Kidney as the information out there is not very encouraging.

0 likes, 9 replies

9 Replies

  • rocky31676
    rocky31676 Cinders68

    Posted

    OMG, Sorry to hear. ESRD is very rare, i am not sure why or how can this happen. NEver heard of this. Your the first. 

     

  • jennymoulton197
    jennymoulton197 Cinders68

    Posted

    Oh goodness, my 18yr old son has just neen diagnosed with HSP and currently recieves tratment for a defective kidney (just had 60 stones removed and there are more than 15 still in there) the next operation he has will be to remove the kidney but my concern is now he has this condition it may damage the good one then we will be in real trouble. We have had the same lack of support and information you have had only had a consultant come once to look at him as he had never seen this condition in real life just in text books. We have been discharged with no follow up appointment or advice the only place i have recieved any support is on this site which is shocking really. Good luck with your daughters treatment sending lots of love .
    • Cinders68
      Cinders68 jennymoulton197

      Posted

      If only this group allowed us to talk to each other it would help us a lot. I think with the lack of knowledge and the incompetence of the medical profession I'm sure there would be many more law suits for not looking after our kids correctly! Are you in the UK? We are in Northampton

    • jennymoulton197
      jennymoulton197 Cinders68

      Posted

      Hi I agree it would be great to talk to other in the same position. We are in Nuneaton so not far from you guys. We receive our kidney treatment in Leicester General my son is currently there having problems with his stent so they have removed it so hopefully will be home today. No one seems interested in the HSP although his pain has gone and the rash is only on his legs now so fingers crossed we have gotten over it.
  • Magic65
    Magic65 Cinders68

    Posted

    So sorry to hear about your daughter. My daughter has suspected HSP when she was 3 (she is now 10) I think she only had a mild case as she didn't have the rash but has microscopic hematuria and high blood pressure.  They are trying to control her blood pressure but it has raised her creatinine levels so we are back for more tests this week. I am in Leicestershire so not far from you and she is under the care of the LRI but we are thinking of having a private consultation. (Although I'm not sure were to go for this) I hope you are able to get some more information.

     

    • Cinders68
      Cinders68 Magic65

      Posted

      We are now waiting to have our second opinion approved so we can move to bch will let you know if it's any better than HOSH, it cant be any worse!

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