Langerhanscell

[myamunchkin]

hi iv been living with this condition for the past 7 years and some days are better than others I'm on oxigen 16 hours a day is there anyone with the same condition

[Dilly2]

Hi myamunchkin you don't say what your condition is I assume COPD. Can you please give a bit more detail best wishes

[myamunchkin in reply to Dilly2]

my condition is langerhans cell

[Dilly2 in reply to myamunchkin]

Thank you I shall do some homework about it I haven't heard about it but I'm sure people on this forum has so I'll keep fingers crossed for you hope you get some reply soon best wishes

[Katinka46 in reply to Dilly2]

It’s Langerhans Cell Histocytosis. Rare, difficult, different manifestations.

K x

[myamunchkin in reply to Katinka46]

yes it is apparently iv had it a long time but only presented its self about 7 and half years ago it means my only course. Of action. Is to keep me stable for as long as possible and the only other option. Is to have double lung transplant

[Dilly2 in reply to Katinka46]

Thanks

[Katinka46]

Hi Myamunckin

There are others here with your disease. But not many! I am sure that you will have a response soon. I hope you feel you are being cared for properly by the medical profession and family and friends.

Definitely one of the Zebras (rare diseases) not a club anyone would choose to join.

Hang in here.

All the best

Kate 🦓

[myamunchkin in reply to Katinka46]

aww thanks trying my best take each day as it comes

[Katinka46 in reply to myamunchkin]

Intrigued by the patch of coastline on your Avatar. America?