SRNA recognizes progress for TM during Transverse Myelitis Awareness Month

June 16, 2024

Throughout the month of June, we at the Siegel Rare Neuroimmune Association (SRNA) are recognizing Transverse Myelitis (TM) Awareness Month. This is a time to highlight the stories and experiences of those who have been diagnosed with TM and their loved ones, share information about the disorder, raise awareness, and come together. It is important to spread awareness of TM to help lead to faster diagnoses, initiation of effective therapies, and better understanding of the realities of living with this diagnosis.

The Siegel Rare Neuroimmune Association (SRNA), formerly the Transverse Myelitis Association (TMA) is a not-for-profit organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM).

What is transverse myelitis (TM)?

Myelitis roughly translates to “spinal cord inflammation,” which can result from an infection or inflammatory cause. The term transverse myelitis has been adopted to describe inflammation of the spinal cord due to a misdirected immune response, resulting in varying degrees of weakness, sensory alterations, and autonomic dysfunction (the part of the nervous system that controls involuntary activity, such as the heart, breathing, the digestive system, and reflexes). Reports describing TM date back to the 1880s, but the first known use of “transverse myelitis” is in 1931, where it was used to describe inflammatory changes across the anatomical “transverse” plane seen on autopsy. The Transverse Myelitis Consortium Working Group provided a framework to delineate TM from non-inflammatory spinal cord disorders in 2002.

Learn more about TM

TM Resource Library

Community Stories with Transverse Myelitis

We asked members of our community who have been diagnosed with TM to share how their diagnosis has impacted their lives. Below are some quotes from people living with Transverse Myelitis and videos of people sharing their stories.

This Is Me: Terry

This is Me: Rick

I was in intensive care for four days, and when I got out, I walked with a cane and my hands didn’t work well. My triceps had shriveled noticeably. In four days. Much of my body tingled. There was a swathe around my belly where I could feel almost nothing, and my sense of hot and cold had vanished in much of the skin of my arms, legs and torso. Before I lurched into a shower, I had to let some water run on my shoulder or face to determine if it was scalding or freezing or somewhere in between

Read more of Rick’s story

This is Me: Allen

This Is Me: Angela 

“I listed the unexpected things because you can’t expect the unexpected. What you can do is deal with what is occurring positively and be thankful for the corrective measures that assisted in your care and recovery. I’m conquering a health battle I never imagined I would have to fight. Through it all, I shed a lot of tears grieving what I had lost and trying to understand what was happening to me, wondering what my life would be like in the future. The good news: I am walking independently with some lingering symptoms; tight muscles, lower extremity sensitivity, hip impingement, and nerve tingling.”

Read more of Angela’s story

This Is Me: Julie 

This is Me: Laura

“Life is still different, but I feel I can ask for the accommodations I need. And as my OT put it, “Save your energy for what matters most and get help to fight the fights you don’t have energy for.” Hiking is out of reach right now, and my morning walks with my dog aren’t as long as they used to be, but I’m hopeful. I share my story for anyone who needs to hear that having a little bit of hope can make a big difference while you find a way to get back to doing the things you love.”

Read more of Laura’s story

This Is Me: Mary-Jo

This is Me: Gordon

I think creating awareness is a positive thing to do, because awareness brings knowledge and knowledge brings hope. And when a person is hopeful they can also be happy. Our minds have a strong impact on our bodies. And when our minds can make us hopeful and happy, it can bring really good things like laughter and happiness and love.

Watch Gordon’s full “This is Me” video

How to get involved during TM Awareness Month

Get involved in TM Awareness Month by following us on social media (@wearesrna) or becoming a member of SRNA. Share our posts with family and friends to help spread information and stories!

Become a member of SRNA

Legislators have the power to pass bills into law that will have a direct impact on people. Contact public officials and tell them you support policies that meet the unmet needs of individuals diagnosed with TM. In the United States, send a request to your mayor or governor for a proclamation in recognition of TM Awareness Month in your city or state.

Since 1994, SRNA has supported individuals affected by rare neuroimmune disorders such as ADEM, AFM, MOGAD, NMOSD, ON, and TM. Because we —and you— do care. There is strength in numbers. If we collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.

We are all stronger together!

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