June is TM Awareness Month!

Tomorrow marks the beginning of Transverse Myelitis Awareness Month! Throughout the month of June, we will highlight members of our community who have been diagnosed with TM, share information about the disorder, and invite you to a TM Awareness Virtual Event. It is important to spread awareness of TM to help lead to faster diagnoses, more effective therapies, and better understanding.

Myelitis roughly translates to “spinal cord inflammation,” which can result from an infection or inflammatory cause. The term transverse myelitis (TM) 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. You can read more about TM by visiting our information page and our Resource Library.

We asked members of our community who have been diagnosed with TM to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.

Some difficulties I had early on included the overwhelming feelings of “am I ever going to feel or be normal again?” Also how to navigate and learn about this rare neuroimmune disorder and how to support my body going through some crazy changes. I lost all bladder and partial bowel functions and was barely able to walk. I was so scared early on and everything in life had to go on hold until I was able to mentally and physically tackle getting better. I have learned that surrounding yourself with loving and supportive people is key and maintaining a positive attitude as much as possible. Also it’s okay to give yourself permission in small doses to feel anger, frustration, sadness, fear, and uncertainty.” – Carol Messenger

I have only partial capability from the neck down. Cannot walk unassisted. Limited fine motor control in my hands. Constant pain, spasticity, and fatigue. Most of the things I loved doing are unavailable to me now. But I love my life. My wife has been a tremendous support. I’m fortunate that my personality bends towards gratitude rather than despair. Just the way I’m wired.” – Scott Plutchak

I have made much progress over the years, but the struggle is very real on a daily basis. I battle depression, pain, and overall just accepting living life with a disability. I have learned to manage severe bladder dysfunction and numbness in my right lower extremities. I have very limited function of my toes and walk with a drop foot. I wear an AFO (Ankle Foot Orthosis) device on my right leg. Despite these major changes in my life, I have continued to push forward. I continue to pray for a full recovery, no matter what the outlook may be or seem.” – Cicely Anderson

In the beginning, I couldn’t move from the chest down. After plasmapheresis and IV steroids, I started to move and had to learn to walk again. Luckily for me, I had an awesome team at the rehab hospital and I left there with my walker. More therapy led me to just a cane. After 4 years, that’s where I am now. Reading stories from other TM warriors is one of my favorite things to do. I love seeing their journeys and how far they’ve come!! We can do anything if we put our minds to it!!” – Chery Begin

Everything I did was painful and I was told that I would recover in a couple of months. It was months later when I had to get my files from the hospital did I learn of my diagnosis. I was very frightened by the lack of communication with the doctors. I made an appointment with a specialist in neurology. I learned the facts about TM That was almost five years ago and I’m still partially paralyzed. I have good days and I have bad days. I was very depressed and finally, I decided to turn lemons into lemonade. In the summer of 2020, I received my certification as a professional aquatic exercise instructor. It’s the most rewarding job that anyone can imagine and I love what I do. Yes. I get tired of teaching from the deck, and back-to-back classes can be grueling, but I wouldn’t trade it for anything. I have so many people tell me how much their lives have improved and how much better they feel.” – Gordon King

Get involved in TM Awareness Month by following us on FacebookInstagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to TM and improve the lives of those who have been diagnosed with this disorder.