Residents seek answers for rare illness

What started as a three week flu for Sheldon’s Ian Hawkins became a serious health problem that led to him sustaining paraplegia.

In 1993, Ian was a fit and healthy 54-year-old who was still working and leading an active life.

He had never heard of the disease that led to him having to use a wheelchair, until he became paralysed from the chest down, and was eventually diagnosed with the condition, Transverse Myelitis (TM).

“The original diagnosis was Gillian Barre Syndrome and I was admitted into a neurology ward. However, after displaying symptoms that didn’t match up with that Syndrome, the Registrar and Director of the Spinal Injuries Unit were called in,” Ian said.

“When I was shifted into the Unit I was injected with steroids, but it was too late for them to take effect. I suffered spinal shock, which lasted about six weeks, and had a profound effect on my ability to actively participate in the rehabilitation program.

“There was only ever one line about TM in the medical textbooks when I was first diagnosed. Now, there are many thousands of pages about it on the internet, and it’s well documented in medical journals.”

Next month marks Transverse Myelitis Day (Monday, 17 May), with members of the Spinal Injuries Association and medical professionals meeting at the organisation’s Woolloongabba office to participate in a two-hour live video conference with USA Transverse Myelitis Association President Sanford Siegel, and Dr Benjamin Greenberg, the Transverse Myelitis And Neuromyelitis Optica Program Director at the University of Texas.

Sanford established the US-based TMA in 1994 shortly after his wife, Pauline, was diagnosed with the illness. His Association now has 7,800 members in more than 80 countries.

Spinal Injuries Association CEO Mark Henley said TM was an uncommon neurological disorder that affected between one and five in a million people.

“Transverse Myelitis is a viral disease caused by an inflammation at a particular level or segment of the spinal cord. It can occur in children and adults of both genders and in all races, but the peak incidence occurs between the ages of 30 and 39 years.”

Mr Henley said TM symptoms included a sudden onset of lower back pain, muscle weakness or abnormal sensations in the toes and feet, paralysis, urinary retention and loss of bowel control, although these symptoms could also be experienced gradually, as in Ian’s case.

“While some people may experience minor or no residual problems, others may continue to experience ongoing impairments that affect their ability to perform everyday tasks.

“TM generally occurs as a singular episode; however a small percentage of people may have recurrent episodes. People with recurrent TM should be evaluated to consider a long-term therapy and to have support systems put in place for adjusting to live with TM.”

Issued 13 May 2010.