Langerhans cell histiocytotis

[Sandrapez]

Hi I have been diagnosed with pulmonary langerhans cell histiocytosis last year...I now have cysts in the lung due to this disease does any one else have cysts? I'm also concerned that not many doctors know much about it, does any one else have this problem? Answers appreciated. Thank you

[PastMeBest]

Hi Sandrapez just like to welcome you to the forum.

Sorry I haven't heard of Pulmonary Langerhans but I'm sure some of our members have and will be able to help you.

I wish you well.

John

[Sandrapez in reply to PastMeBest]

Thank you.

[sassy59]

Nice to see you and welcome. I have heard of PLH but know nothing about it so can't help.

I hope you will get some replies soon. Take care xxxxx

[Katinka46]

Welcome to this brilliant forum. I believe there are some members with your disease. Certainly not common. Join the Zebra Club of unusual/rare diseases. Doctors, GPs anyway, will not know a lot about them, but if they are confident and open-minded then they will know that patients will be well-informed and will listen to us. Unfortunately ----simply because of the small numbers of patients ---- research is sparse, and it is difficult to get large enough cohorts of sufferers to get clear statistics.

All the best

K x

[Katinka46 in reply to Katinka46]

P.S. Love the photo.

[Sandrapez in reply to Katinka46]

Thank you.

[Sandrapez in reply to Katinka46]

Thank you for your reply..👌

[Sandrapez in reply to Katinka46]

Thank you..👍

[Lin76]

Yes get night sweats,and started out with 1 cyst got 3 now.