Large Granular Lymphocyte disorder

[Twtpws]

I have Large Granular Lymphocyte Disorder which is in remission.  In it's acute form it has caused much the same problems as leukaemia but my blood cells were distroyed by my own immune system rather than a cancer.  The diagnosis took years and had been previously labelled "Red Cell Aplasia" of unknown cause.
I have never met or known of anyone with the same problem, and there was nor had ever been a patient in the large teaching hospital which I attend.  I am hoping that there is someone out there who can relate to my disorder and relieve my isolation.  Would love to compare notes.

[Txannie1960]

My husband was just diagnosed with this and I am terrified!  What is your Neutrophil count?  Please tell me what the prognosis is....Thank You!

[Twtpws]

Great to hear from you - the first person I have ever had contact with who has this disorder.
How bad is it for you? I have been in remission for the last few years (my second remission) and don't take any medication at all, but at it's worst I was having transfusions every three weeks and also had the associated arthritis.
Looking forward to chatting with you.

[pawsthree]

I have been diagnosed with this diorder "Large granular lymphocytic Disorder" for the past 13 years.  It would be interesting to discuss with someone.