Has anyone been diagnosed with LangerHans Histiocytosis cell X?

I have been diagnosed with this condition after a lung biopsy.I have been told its rare and my hospital have never come across or treated it. Im now in the hands of Papworth hospital and having a lung transplant. Im having 3 day transplant assessment on Monday. /i was wondering if anyone else has this.


8 Replies

  • Sorry I have never heard of this There are a few member though that are on the transplant list so hopefully some one will be able to help with that, give the BLF helpline a ring on monday and they will be able to help Wishing you lots of luck on Monday

    julie xxx

  • I haven't personally got this but the MacMillan.org.uk site seems quite helpful. I know that Papworth has an excellent reputation so I think you are in the best hands. Very best wishes. X

  • Thanks for that. I been there before and was well looked after


  • hi kelv37 i was diagnosed with langerhans cell histeocytosis 4 years ago there is a web site you may find helpful histio.org it has lots of information. i am seen at the royal brompton every 6 months.

  • Hi Tracey thanks for that. I did research found some sites but they was linked to America but missed that that one. What treatment are you taking. Mine deteriated after getting pneumonia 3 times this year and ended up in ICU with stage 2 resperitry failure. Strange when I go to differet hospitals and they never heard of it and they have to look it up lol

  • All the sites are in America for some reason,I'm not on treatment as such only inhalers and occasionally steroids. But have been told at some point I will need a transplant as it is slowly deteriorating. What treatment do you receive ?

  • Yes I just looked.I was on the same as you but mine has been 6 years and now on 3 inhalers calcium tabs carbocisteine, Omeprazole, Unipyllin, perdisone, oxygen and nebs but nothing now works and gone down hill now. Still smile and laugh though gets me through it and still work even though it very hard as Im a Plumber but lookig forward to this Monday as Im having 3 day transplant assessment .

  • good luck with everything keep me posted on how you get on x

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