Toci11 years ago

As I understand it, this is a very rare disease, yet you are the second person to post about it in the last week! See here -

healthunlocked.com/blf/ques...

Maybe you should private message the other new member?

Hidden11 years ago

Hey mags33 welcome.

Not seen any one else post about L.A.M. however that's not to say they are not about. Keep checking back, your post may well encourage them to respond.

LAM is very rare I believe.

You're probably aware of BLF page blf.org.uk/Conditions/Detai...

and the helpline number (click red balloon for details)

Best wishes and breathe good.

BC x

Hidden11 years ago

Much love and thanks to you Toci and BlakeyC....It feels so good to be here!!

Yep so rare but I appreciate this as it means I can always be positive in dealing with it .....really hope that makes sense xxx

MarieW-F11 years ago

I follow a woman on twitter with LAM. She has had a lung transplant and is utterly inspirational in everything she has achieved.

Marie x

Hidden in reply to MarieW-F11 years ago

Thanks for that Marie.....there are not many that have even heard of LAM so I love that u have that connection x

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MarieW-F in reply to Hidden11 years ago

I think she might also blog, her name is Justine. She went to the transplant games and does amazing boot camps and stuff. I think she recently had a photo shoot for a magazine too. Just had a look and here is her blog...

justinedoublelungs.blogspot...

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Hidden in reply to MarieW-F11 years ago

Oh Marie Ive heard of Justine...... Yes very amazing lady.

I was diagnosed over 3 years ago and read her blog/website at this time.

My situation is very different as is the norm for LAM patients....it a weird one but I handle it really well x

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jac49311 years ago

Hi mags 33 i've not heard of LAM but im a bit of a rareity aswell i was diagnosed with LCH 2 months ago. Nice to meet u. Jackie xx

Hidden in reply to jac49311 years ago

Pleased to meet u Jackie x

Yes I know of LCH.....very much likewise in the damage to lungs as LAM.

Hope u are well x

Take Care x

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jac49311 years ago

I am well thanks mags 33 . Stopped smoking a week after diagnosis . It cleared up my cough tierdness and general yukiness now wrking on the breathlessness with lots of exercise. How r u doing hope u r not feeling unwell . Jackie.x

longlungs11 years ago

Hi maggs a warm welcome to you nice to meet you hope you are able to find someone with the same as you,the only thing I know of LAM is that it's rare and is the longest word in the world,igot breathless try to pronounce it! Lol.See you soon I hope.Janexx

Hidden in reply to longlungs11 years ago

Thanks Jane....you really made me laugh there...take care xxx

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