TLGL is so rare I can't find anybody to talk to me about it. There are only three physicians in the US who specialize with it directly so I'm getting no help. My insurance will not let me go to those doctors and I feel my locals physicians either don't understand or care. Anyone else in my shoes? i'm 61 and I was diagnosed one year ago.
Any doctor I see for any other problems I know more than they do. Study as much as you can . find a good oncologists that will listen to you and give you choices on your treatment. Study every treatment So you can be part of the treatment.
Hi Jimmie thank you for reaching out. I'm sorry you are dealing AP anemia and Aplasia. I guess i'm lucky so far. Happy New Year! I do have some questions and will reach out after the holidays.
Donise I have cronic T-Cell LGLL two years. if I can help let me know i will answer the best I can. I also have A Plastic Anemia with pure red cell aplasia.
Thanks Beth.
Wow. that sound vey challenging. I am in the CLL bunch so am not having to deal with trying to access the right help. I hope something will open up for you. Beth