PLCH

[Little-Gem]

I have recently been diagnosed with PLCH. I know its a very rare condition but can anyone recommend anywhere to gain useful information regarding it? Thank you

[stone-UK]

Hi

May be of use.

sharecare.com/health/pulmon...

[Little-Gem in reply to stone-UK]

Thank you that was helpful.

[Katinka46]

Hello and welcome to this forum. There are others here with your condition. And I am sure they will respond.

The members here are somewhat divided about consulting Dr Google to find out about one’s disease. However, as someone with a rare disease (rare diseases are known as Zebras, hence my Avatar) I have used Google extensively to research my condition. And the last time I saw my consultant he told me which websites he finds most useful and we compared notes. Doctors (well, the good ones) are happy for patients to find out about their diseases, especially the rare ones, and often accept that the patient will know more than they do. So try Dr Google. Having said that, each patient’s case will be individual and may well not fit a pattern. With rare diseases there may not be enough patients to develop a statistical trend.

All the best

K

[Little-Gem in reply to Katinka46]

Thank you. My consultant did say to use google although it ia nice to talk to other people that have the condition. I know mine is advanced so not much information on google when it gets to that point.

I shall keep looking. Thank you

[Hidden]

Sorry about that Little Gem. I was tested for that when doctors were searching for my rare disease LAM but it came negative.

I find the Americans are advanced at research etc

NIH is excellent so tell me my Lammies American friends.

ncbi.nlm.nih.gov/pmc/articl...

Hope the link helps.

What I would say is that those conditions vary so much from an individual to another that I wouldn’t take all the symptoms description and prognosis for granted.

When I was diagnosed for LAM, lymphangioleiomyomatosis, I went on orphanet and read about it and I thought well put it aside, because in fact I was told I had severe asthma for years and I still feel like if I have severe asthma. The fact that I learned that my lungs were full of cysts has not made that much difference to my daily life so far apart from the fact I am tagged rare disease thus monitored closely which is good.

So it can definitely be scary to be diagnosed with a rare disease but it doesn’t mean your body is ticking all the boxes.

Love x

Fran

[Little-Gem in reply to Hidden]

Thank you Fran, I shall definitely look at the link.

Gemma x