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Published September 22, 2020

THE VIEW FROM MY SEAT

Vaccine race highlights rare disease

By Ernie Williamson / The Bulletin

For eight years I have been in a wheelchair with a disease most people haven’t heard of.

Now, for a moment, the whole world is talking about my disease. Newspapers are writing about it. Television stations are doing features on it. And folks are going on-line to learn about it.

You see, I have transverse myelitis, the rare disease in the news recently when it was revealed that AstraZeneca temporarily halted its Covid-19 vaccine trial.

It’s reported the trial was suspended because one enrollee was found to have transverse myelitis, an inflammation of the spinal cord. If true, she joins a small club that includes me.

As of this writing, the diagnosis of transverse myelitis has not been confirmed, and it is unclear whether the possible transverse myelitis was directly linked to the vaccine. The pause will allow the company to conduct a safety review and investigate whether the vaccine caused the illness. The trials resumed in Britain after the review.

In the meantime, most of us transverse myelitis victims are glad the spotlight was on our disorder, if for only a short time. Because only about 1,400 Americans are diagnosed with the disorder each year, the disease understandably gets little attention. There is no TM bike ride.

Those of us with TM hope the new publicity about our disorder will lead to new research. Currently, there are treatments, but no cure.
Comments on a transverse myelitis Facebook group I belong to weave a common thread: “I know it’s getting national attention,“ one victim wrote. “Maybe they’ll research it more.”

“My hope is that this will bring this disease to the forefront for research and work towards better treatments and a cure,” wrote another.

Until one day in February of 2012, I played tennis almost daily, jogged and rode my bike. I didn’t smoke, didn’t drink and tried to eat healthy.

Then, one Friday I left work early, feeling as if I were coming down with the flu. I did. Ten days later I couldn’t walk.

I remember the neurologist breaking the news to me that I had transverse myelitis and would probably “never walk again.” I didn’t believe her. How could this happen to me? But she was right. I have been in a wheelchair ever since.

Since it is in the news, here is a primer on the disease. You can impress your friends.

According to the Mayo Clinic, transverse myelitis is an inflammation of both sides of one section of the spinal cord. The disorder often damages myelin, the insulating material covering nerve cell fibers.

The inflammation interrupts the messages that the spinal cord nerves send throughout the body, causing pain, muscle weakness, paralysis and sensory problems.

There are many different causes of transverse myelitis, including infections (that was me) and immune system disorders like lupus or Sjogren’s syndrome that attack the body’s tissues.

In most cases caused by infection, the inflammatory disorder appears after recovery from the infection.

TM can affect people of any age, gender or race and does not appear to be genetic.

Treatment for transverse myelitis includes medications and rehabilitative therapy. Most people recover at least partially. Those of us with severe attacks are often left with major disabilities.

Signs and symptoms of TM usually develop over a few hours to a few days and may sometimes progress gradually over several weeks.
Mine developed over a week or so, but I met a fellow TMer whose case came on suddenly. She said she stepped into the shower, inexplicably collapsed while getting out, and hasn’t walked since.

According to the Mayo Clinic, vaccinations for infectious diseases have occasionally been associated as a possible trigger. However, at this time the association is not strong enough to warrant limiting any vaccines.

The association does, however, make the suspension of the AstraZeneca trial of special interest to those of us with TM and reinforces the need for adequate testing of new Covid-19 vaccinations.

(Ernie Williamson welcomes reader input. Please contact Ernie at williamsonernie@gmail.com. Or, send letters in care of The Bulletin, PO Box 2426, Angleton, TX. 77516)