I have recently been diagnosed with T-cell LGL (Large Granular Lymphocytic) Leukemia and have been in search of others with the same or similar condition/diagnosis. I stumbled upon this forum and was pleasantly surprised that there are at least a few threads on LGL in my quick search so far.
Since LGL is so rare, information regarding diagnosis, treatment options, clinical trials as well as information on existing support groups - online or offline is very limited.
I'm hoping I meet someone here and talk about related experiences with LGL. Btw, I have consulted and in touch with Dr. Thomas Loughran at Penn State Hershey who is considered a "Guru" on LGL.
Meanwhile, I took an initiative to start a "closed" facebook group just recently in hopes to let the others with LGL come together to share their experiences, feelings as well as learn from and share with their knowledge on LGL topics. So far, I have some leading leukemia patient advocates in the group and the goal is to recruit LGL patients, family members, and caregivers.
Large Granular Lymphocytic (LGL) Leukemia Group. Short link to the group: http://goo.gl/Ekzl8
If you are relevant, directly or indirectly, to LGL, would you please consider joining the group? I would love to hear from you here at the least. Thank you!