Pauline Siegel was 35-years-old when she was unexpectedly struck with a rare disease that would render her disabled from the waist down.
The diagnosis took several painful days to finally receive but that was back in 1994 when there wasn’t much known about Transverse Myelitis. During this rare condition, the central nervous system acts as a bridge between the brain and the rest of the body becomes inflamed. As a result, patients will feel weakness, sensory alterations and autonomic dysfunction. To learn more, click here.
To her dismay, not a single support group existed for TM.
Pauline and her husband Sandy took the initiative and created their own support group in their Columbus Ohio home. Sandy took on the role of president and wrote the weekly newsletters. Their aim was to create a sense of comradery and ensure that nobody ever felt alone, like they once did.
They are called the Transverse Myelitis Association and the organization was the driving force for Pauline who was a retired Elementary School teacher. Sadly, Pauline passed away in August during a car fire while she was vacationing in Montana.
“She offered guidance and support to anyone who called for help, even if it wasn’t easy to recount the emotional experiences she went through,” Said sandy to the Columbus Dispatch. “She was courageous and unbelievably generous.”
Thanks to Sandy’s newsletters, Pauline was a recognized face in the community of TM patients who were desperately searching for answers.
“You can feel isolated in your experience, and frightened, until you meet someone who understands what you’re going through,” Sandy said.
Pauline loved her big family and always put them first. She left behind two sons and their wives, five grandchildren and her trusty service dog, Kazu, a now retired black lab-retriever mix. Pauline refused to let the disease slow her down, continuing her teaching career until early last year. With a wheelchair and motorized scooter, she did her best to get around.
She left an impact on the world and inspired those with rare diseases to become self-advocates. Because of this, people from all over the world watched her funeral online. Pauline now lives on through the Transverse Myelitis Association.