I almost died in April 2012. I was simultaneously hit by both pneumonia and Angioimmunoblastic T-Cell Lymphoma (AITL). Prior to that, I had never stayed in a hospital overnight and had rarely been ill. I was a 47 year old woman, who ran 45 miles per week and completed a full marathon in November 2011.
It has been a very interesting experience and every day brings a “new normal” for me. I have learned so much about my disease, lymphomas in general, hospitals, treatments, doctors, nurses and other patients. One of the biggest hurdles seems to be the lack of information about AITL, its treatments and what works and what doesn’t. Any one physician would have a difficult time treating the isolated instances that crop up, and there is not yet any clearinghouse for information or patient or physician contacts.
I would like to kick-start that effort. I have recently initiated the Angioimmunoblastic T-Cell Lymphoma Informational site where I will gather information and contacts to help fight AITL. I need help spreading the word and gathering participant patients, caregivers and physicians.
My hope for all in the AITL community, is that by sharing this information to anyone who might be able to add to the data, more awareness will be generated with increased collaboration for better treatment.