ONE PERSON CAN MAKE A DIFFERENCE
One day in l994 Pauline Siegel, a 35 year-old elementary school teacher in good health, bent down and was instantly paralyzed from the waist down.
What could be worse than that? A trip to the emergency room and learning that the doctor not only doesn’t know what’s wrong but implies, “It’s in your head.”
What could be worse than that? Enduring a variety of painful medical tests and being diagnosed with Transverse Myelitis. (TM)
What could be worse than that? Finding out there is no cure, no known cause and the symptoms are severe pain, fatigue, bowel and bladder dysfunction and depression.
Transverse Myelitis is a rare neuro-immunologic condition which causes inflammation of the myelin tissue surrounding the spinal cord. One-third of people with TM recover after months or years. One-third have a variety of symptoms that range from minor to incapacitating for the rest of their lives. One-third are paralyzed for life,
Pauline’s husband and now caretaker, Sandy Siegel, searched for information about the disease, its causes, and treatment and found virtually nothing. At that moment, Sandy who worked for the city of Columbus, Ohio and had a passion for anthropology began a journey that is still going on today and proves One Person Can Make a Difference.
Sandy with the help of a few others including Jim Lubin and Debbie Capen who both have TM, began a search for knowledge and resources for people with rare neuro-immunologic disorders. In l997, Sandy helped to incorporate the Transverse Myelitis Association (TMA) and ultimately became its president which he still is today. Debbie and Jim are also still integral parts of the TMA. (The name TMA is a tad misleading because the association also helps five other rare neurological conditions.)
Sandy used his own money for TMA expenses and his home address and phone are the “international headquarters” for the TMA. For over 20 years Sandy has answered the phone day and night and listened to people recently diagnosed with one of these disorders. Questions range from where to get help, what symptoms to expect, what’s the best treatment and where to get financial aide for medical needs and often tearfully why me or why my child.
Late one night young parents were frantically surfing the internet. Their two-year-old had been stricken with TM and was paralyzed. Couldn’t move her legs. The local hospital treated her with intravenous steroids and released her still paralyzed. “Nothing else can be done.” Luckily they found the TMA website and called Sandy. Sandy made some calls, and referred them to doctors and a hospital knowledgeable about pediatric TM. Within 48 hours, the child was admitted. Today she walks.
He also began and wrote a newsletter keeping all TMA members up-to-date with the recent research in the field.
Sandy is soft-spoken, compassionate and kind. He’s funny. He’s also tough and never gives up. “You can’t say no to Sandy.” He called doctors—no pestered doctors until Dr. Douglas Kerr opened a transverse myelitis center at Johns Hopkins, the first of its kind in the world. Because of Sandy’s persistence, there is also a center in Dallas with more opening in the near future.
Today TMA has 11.500 members in the US and internationally. This non-profit funds research fellowships, research, an annual quality of life camp for families who have a child with TM, symposiums, support groups, awareness walks in cities all over the US along with publishing and distributing much needed information through brochures, web forums, blog, Ask the Expert Podcasts and more. ONE PERSON MADE A DIFFERENCE.
For more information check TMA on this website or got to myelitis.org. Thanks to Debbie Capen for proofreading, correcting mistakes and ideas.