Adult langerhans (PLCH)

[Min97]

Please is there anyone out there who can help. My mom has been diagnosed with this horrible rare disease. I need information, a doctor with knowledge of this in the eastern united states. Please respond if u know anything about this disease PLCH/PULMONARY LANGERHANS CELL HYSTIOCYTOSIS or would like to help a nurse who has helped so many others in her life.

[y_not]

Although I can't help, I did find that 2 years ago and 4 years ago the condition was discussed and, although they have since been inactive on the site, more than five people said that they were sufferers so, please hang on in there because someone will be able to help soon.

Sounds horrendous - good luck & best wishes

[PMRPete]

healthunlocked.com/blf/post...

[Hidden]

Hi if you type your search term in the box at the top right which says 'Search British Lung Foundation' all the previous posts/replies will come up.

[Timberman]

The BMJ has an interesting article on diagnosis here: thorax.bmj.com/content/thor...

And moe on the disease iutself here: thorax.bmj.com/content/thor...

[Lin76]

Hi daughter! Yep we crossing paths again. I am lost

[jac493]

Hi I have PLCH and doing OK. Not been on the site for a long time. If you look at histio.org you can get all the information you need and access to doctors in your area. I'm in the UK but on the adult histio warrior fb page their are many people who can recommend Dr's in the states and answer any questions u have. Hope this helps.

[Min97]

Thankyou so much

[Beka-S]

My husband has had it for about 24 years. He had chemo back then allegedly to stop its progression after a pneumothorax. He only has 30% lung capacity but continued working until 6 years ago.

He walks slowly and struggles with slopes, stairs etc but slowly he manages it. He has various inhalers.

Really important your mum gets pulmonary rehab. Learns to breath well, keep muscles very well toned so that they help compensate for lung capacity. Also important she exercises generally to keep her heart strong. Tempting to stop as it is hard work. Detemination is key.

CBT should also be offered to help with the positive attitude and coping when breathless which can be very scary.

24 years later, lung transplant is still not needed.

Hope that helps