Hi everyone,
I have been diagnosed with LGLL on May 2025 and I feel kind of lost. How to help my self best?
Mummu
HI Mummu and welcome to this corner of the Community although I am always sorry to hear about……….. diagnosis. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Large Granular Lymphocytic Leukaemia (LGLL) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Like my first type of Lymphoma LGLL is a slow growing blood cancer........ also on the rare side but let's look for any group members with LGLL to pick up on your post and get back to you.
You may want to check out Leukaemia Care UK who the main UK Leukaemia charity, they produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
Always around to help more or just to chat
