A Passion for Speading the Word About Transverse Myelitis Grew from Years of Misdiagnosis


Why did I volunteer to start a SRNA Walk-Run-N-Roll in Chicago? The short answer is anger. The long answer is a passion to educate and inform about transverse myelitis and related disorders.

Why anger? Because for 17 years I had a perfectly obvious transverse lesion on my spinal cord at C-5, but no one knew because no one bothered to look. Instead, my doctors gave me the canned answers they gave every 44-year-old woman who complained: (a) depression, (b) anxiety, (c) carpal tunnel, (d) fibromyalgia, (e) pelvic floor disorder, (f) vitamin deficiency, (g) hormonal changes, (h) stress, (i) all of the above. The correct answer was “none of the above” but my friends, family and doctors never considered that I might have a rare but very real condition. One psychologist suggested electro-shock therapy to help me overcome my persistent belief that I had trouble walking. Another wrote a scholarly paper on me–I was her interesting psycho-therapy patient whose depression manifested itself as feelings of numbness and heaviness–especially in her legs.

It’s a long story as to how and why I was correctly diagnosed with TM. Call me if you want to hear it. The bottom line is that I might have died believing I was crazy and lazy if some strange coincidences had not taken place. When I learned in 2012 that my condition had a name–Transverse Myelitis–and it could be seen on an MRI, I was devastated. And angry. The diagnosis was shocking, but even worse was the fact that I lived impaired–and in complete ignorance–for 17 years.

After I was diagnosed with TM, I realized that the cure for ignorance in all its forms is education. Because of my experiences, both good and bad, I feel personally responsible for educating people about TM, whenever and wherever I can. That’s why I volunteered to start a Walk in Chicago.

Since my diagnosis in February 2012, I have talked to my family, friends, neighbors and coworkers about TM. I have used the social media, especially Facebook, to reach a wider audience. It is through Facebook that I first heard of SRNA’s campaign of “10 Cities, 1,000 People and 100,000 Dollars.” My Facebook “home group” for TM is People Living with Transverse Myelitis, administered by angels-on-earth Jodi Gallon, Leena Mathai, Kim Ravenscraft Harrison and Keaghlan Strauss. In addition to those four, I have met incredible, brave, smart, funny people around the world. Their stories were sometimes tragic and often uplifting.

I cried when I read Facebook posts from teens with TM, from moms and dads of little kids with TM, from men and women with TM who were trying to have and raise families  I met others, like me, who are aging and worried about what the future holds for an elderly TM’er. Then I learned about the related disorders of NMO, ADEM and ON. All are rare neuroimmunologic disorders. Many difficult to diagnose and treat. I heard stories of misdiagnosis, misunderstanding and isolation. But I also found humor, hope and optimism. I have learned so much from my fellow TMers. They have given me the support and understanding that I missed for 17 years.

Support and understanding will abound at the Chicago Walk-Run-N-Roll for SRNA and I want to be sure no one is left out. We are working on details, but we know the Walk will be Sunday, October 6, 2013 at McCollum Park in Downers Grove, Illinois. I hope everyone who reads this will contact me to volunteer, participate, advise or encourage. We already have some fantastic volunteers and we need more. Anyone in or near Chicago whose life has been touched by TM, NMO, NO or ADEM is invited to join us. I hope we will raise funds and awareness but also have a day of fun and celebration for a brighter future for those served by SRNA. Spread the word. See you soon. <3 you all!

~ Nancy, the organizer of the Illinois Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!