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Accepting, not embracing our life with Transverse Myelitis: a mom’s point of view

I remember the first few weeks after my daughter, Erica, was diagnosed with Transverse Myelitis. I thought I was the only person in the world going through this experience. Inflammation, can’t an antibiotic take care of that?  If only I had someone to sit down with me and explain the life altering change we were about to go through. This feeling, even nearly 3 years later, is so isolating. That is why it is so important for me to reach out to other families.  I have learned so much from other parents and adults living with TM. I have also made wonderful, lifelong friends. I relate to them far more than with my childhood…

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Featured

 Transverse Myelitis: What Most People Don’t Know and What Most Doctors Won’t Tell You

The damage caused by Transverse Myelitis in the span of a few minutes or days can leave a person with a lifetime of agony. Transverse Myelitis is an auto-immune disease which affects the central nervous system. This disease strikes children, adolescents, and adults, from everywhere, leaving them partially or totally immobile.

Articles of Interest

Sudden Paralysis and 'The Best Seat in the House'

In 1996, Allen Rucker had no real complaints - married, two kids, a house in West Los Angeles. At the age of 51, his career as a television writer was looking up. He had a little knee trouble, but looked forward to a return to a running. Then one day, a Tuesday, out of the blue he started to feel a burning sensation around his waist. Inside an hour and a half, he was paralyzed from the waist down by a rare condition called transverse myelitis. It sounds like a nightmare, and he's had a few of those, but in his new memoir, Allen Rucker describes his new life with honesty, accessibility, and impudence. He titles one chapter "Cripple Do's and Don'ts."

A Dancer Relearns How to Walk

Michelle recalls still thinking that her problem had a harmless cause as she waited hours in triage. Eventually, she realized that she hadn’t used the restroom all day. By the time she was admitted, doctors observed that not only were her legs rapidly becoming paralyzed, but that she’d lost bladder function — a red flag for a serious spinal cord issue.

I Choose to Live My Life!

Without making it a sob story, I wanted to share a bit of my history. A lot of people have illnesses or things happen to them where the only choices are to succumb to it or to work hard in order to have a life as well as you can get.

Learning to Accept

My name is Lucy and I am 22. I was diagnosed with TM in August 2013, a few days before I turned 20. My story started at least 9 months before I received an actual diagnosis, and now I am slowly learning to accept and live with this condition.

My Transverse Myelitis Journey

It all started with a sharp shooting pain across my upper back and going up to my neck. Following that, I felt a tingling sensation running up and down my right arm, like ants crawling . It was uncomfortable but not painful, so I did not pay much attention to it.

Once Paralyzed, Victoria Arlen Emerged from a Coma to Become a Champion Athlete

The paralympic gold medalist opens up about waking up from a coma, living with paralysis, and learning to walk again.

Transverse Myelitis

Transverse myelitis (TM) includes a pathobiologically heterogeneous syndrome characterized by acute or subacute spinal cord dysfunction resulting in paresis, a sensory level, and autonomic (bladder, bowel, and sexual) impairment below the level of the lesion. Etiologies for TM can be broadly classified as parainfectious, paraneoplastic, drug/toxin-induced, systemic autoimmune disorders, and acquired demyelinating diseases.

Resources

Siegel Rare Neuroimmune Association

The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international 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).

Transverse Myelitis Fact Sheet

Transverse myelitis is an inflammation of the spinal cord, a major part of the central nervous system. The spinal cord carries nerve signals to and from the brain through nerves that extend from each side of the spinal cord and connect to nerves elsewhere in the body. The term myelitis refers to inflammation of the spinal cord; transverse refers to the pattern of changes in sensation—there is often a band-like sensation across the trunk of the body, with sensory changes below.

Transverse Myelitis Society

We are a small UK based charity with over 2000 members whose main aim is to offer support to those who may have, or know someone with, Transverse Myelitis and its associated conditions such as ADEM, Neuro Myelitis Optica (NMO) and others. We are manned by an entirely unpaid voluntary group of people who mostly have TM themselves.

The Canadian Transverse Myelitis Association

The CTMA was created to support patients and their families and to increase awareness for rare neuroimmunological disorders across Canada.

NORD

TM often develops in the setting of viral and bacterial infections, especially those which may be associated with a rash (e.g., rubeola, varicella, variola, rubella, influenza, and mumps).