I'm rare

[winterrose-23]

Hello I got my results yesterday An Iv'e got a rare disease Its called LANGERHANS CELL HISTIOCYTOSIS Iv'e prob always had it but it goes in remission sometimes trying to understand it at mo its something to do ith my white blood cells i make to many so they can cause lung lesions or affect other parts of the body all my symptoms even the little scars that come an go over my skin are to do with it the tiredness aches bad memory breathless is all part of it they are going to send me for reg check ups to make sure it dont get any worse if that happens they treat it ith chemo or radio the lesions can become malignant but their not at the moment yaeh lol they said its usually in children not someone my age so think ive alway had it thats why ive been ill on and off all my lifes a rare disease involving clonal proliferation of Langerhans cells, abnormal cells deriving from bone marrow and capable of migrating from skin to lymph nodes. Clinically, its manifestations range from isolated bone lesions to multisystem disease. LCH is part of a group of clinical syndromes called histiocytoses, which are characterized by an abnormal proliferation of histiocytes (an archaic term for activated dendritic cells and macrophages). These diseases are related to other forms of abnormal proliferation of white blood cells, such as leukemias and lymphomas. has anyone here got this ?

[Jenco]

Sorry to hear your diagnosis. It's not something I have heard of. It's good to know that your doctors have diagnosed it and have got a plan in place. It must have come as a shock to have something so rare but a relief to know that there was a cause for all your problems over the years. It can't have been a bundle of fun feeling rough and no one knew why. Not knowing is one of the hardest things to deal with. I hope it behaves itself and you don't have to get bombarded with treatments. Thinking of you. All the very best. Jenny

[winterrose-23 in reply to Jenco]

Hi Jenco thanks for replying I'm still here just a tad more tired from hospital visits test ect but at least the Drs are checking me over thoroughly

[gerribk]

YES I AM A 59 YR OLD FEMALE DIAGNOSED 2 YRS AGO AFTER AN OPEN LUNG BIOPSY .I WILL BE GOING FOR MY ASSESSMENT AT THE TRANSPLANT CENTER IN CHARLESTON SC ON AUGUST 10, 2015.

[winterrose-23 in reply to gerribk]

Hi Gerribk Thats how I was diagnosed They at first told me I had cancer in both lungs and inoperable so Ive something to be great full for don't plain on going anywhere just yet X