I have a rare disease called AL Amyloidosis. Primary amyloidosis is an acquired plasma cell disorder in which a monoclonal immunoglobulin light chain is produced in the bone marrow and usually found in the blood or urine. AL amyloidosis occasionally occurs with multiple myeloma. The amyloid fibrils in this type of amyloidosis are made up of immunoglobulin light chain proteins (kappa or lambda).The short term for this type of amyloidosis is AL, for amyloid of light chain composition. Symptoms can occur in any organ of the body and include heart failure, protein in the urine or kidney failure, enlarged liver, neuropathy or enlarged tongue. Treatment with chemotherapy has been standard; however newer agents are in clinical trials and being found effective. This is the most common type of amyloidosis in the United States.
info received from
http://www.bu.edu/amyloid/I had a stem cell transplant 5 years ago and I am about to have another one.
I am starting my transplant at the end of May. This takes about 6-8 weeks, but they say I could be out of work for 3 months...Let's hope not.
Will be posting messages on this site daily to give everyone an update on what's going on with me.
