I am 24 years old female with a rare form of the disease: HTLV-1-associated myelopathy. This has caused me to suffer from myositis now. Over the past several months I have searched endlessly for more information on HAM. I also searched for the names of anyone that I could contact who might know a more about this disorder. I am desperately looking for anyone who can HELP me with treatment options, or research clinical trials that I could be a part of, or ANY other information at all on how to control this degenerative disease. I was diagnosed with HAM at age nine. Each year following that, I would loose more and more muscle and body strength. During that time I went to countless doctors who could do nothing for me BECAUSE I HAVE A VERY RARE CASE. I also was admitted to the National Institute of Health in Bethesda Maryland. I was a part of several clinical trials for this disorder under the leadership of Dr. Steven Jacobson and his team of specialists. I was seen by Dr. Carlos Mora and then later on by Dr. Unsong Oh. The last time I was at the NIH, last year, they concluded that there was nothing else they could do to help my situation. There was no other drug I could try and no other clinical trials to be a part of. While trying to control the HAM from getting worse, at age 18, I was given the cortisone treatment prednisone to increase my strength. The prednisone did help a little, however over the past two years I began loosing strength again. This time increasing the prednisone amount to a higher dose no longer works! At this point I am terrified because none of the many doctors I have seen over the years and still see today have any other alternative for prednisone which my body is no longer accepting. Living with the HAM disease has caused many other health issues to arise in my body. That would include: uveitis, osteoporosis, several broken bones, polly-myositis, muscle loss, urinary and bowl disorders, weight gain, and wheelchair bound. Therefore I am desperately searching all over the world for anyone who can help me. If you, or anyone you know, have ANY information that can help me PLEASE CONTACT ME ASAP! I am willing to travel anywhere around the world to see any specialist. I am willing to try any experimental drug at any time. I am willing to do anything or meet anyone that will further my quest for health, and the health of many others around the world with this crippling disease.