Transverse myelitis is a rare neurological disease. If you’re lucky you’ve never heard of. I hadn’t either until Sept. 8, 2001 when after months of misery and pain (including feeling like a boa constrictor was living on my chest) my neurologist told me the name of my disease. Since then it’s been a part of my daily life.
Fortunately, a friend went on the web and found the Transverse Myelits Association (TMA) and sent me a link. www.myelitis.org. This non-profit oganization was founded in l996 by Sandy Siegel whose wife had TM. In l997 you couldn’t find anything about it. The organization has expanded to include five other rare diseases ADEM, NMO, NO, NMOSD and AFM.
One-third of the people who get TM are paralyzed for life; one-third have chronic pain, bowel or bladder problems, depression and/or fatigue; one-third after a period of time that varies from months to years have no residual effects.
- a camp each summer for children and their families with neurological diseases,
- a website with up-to-date scientific information and links,
- research to find causes and cures for these diseases,
- a quarterly newsletter with updates on research, members personal stories, information about support groups, and
- fellowships for doctors to specialize in treating these diseases.
Because of the TMA there is a TM center at Johns Hopkins and University of Texas Southwestern Medical Center Dallas and more in the works.
From the website you are given contact information to reach a live person who will answers your questions, refer you to to medical professionals and listen. Many folks are both fatigued and depressed and being able to connect with someone who knows what you are going through is life-saving.
Because of one person’s effort TMA now has over 11,500 members around the world. TMA membership is free and open to people with rare neurological diseases, caregivers, and medical and other professionals who work with TM patients.
Because of encouragement from TMA, I started a support group in 2007 with Julie Barry that still meets monthly and became a TMA board member in 2008.