Locals to meet others with same rare condition

Six years ago, Louise Remilton, from New Farm (pictured far right), was like most people who had never heard of Transverse Myelitis.

However all of that changed after she was admitted to hospital with burning sensations in her legs, where she spent six weeks undergoing many and varied tests, before being diagnosed with the uncommon neurological condition.

Symptoms include a sudden onset of muscle weakness or abnormal sensations in the toes and feet, paralysis, urinary retention and loss of bowel control, although these symptoms can be experienced gradually.

Next month marks Transverse Myelitis Day (Tuesday, 17 May), with members of the Spinal Injuries Association and medical professionals meeting at the organisation’s Woolloongabba office to participate in a live video conference with USA Transverse Myelitis Association President Sanford Siegel, as well as enjoy a demonstration by assistance dogs from Canine Helpers.

Louise said one of the most challenging parts of her TM diagnosis was trying to explain to her husband David and son Michael, then 15, as well as concerned relatives and friends, what it meant to have an illness that she herself didn’t understand.

“Our family dynamics changed,” Louise said.

“We used to do active things – skiing, camping, outdoorsy things. When I first got sick, I couldn’t do anything. Finding common ground for us to share activities again was difficult.

“But after a while I realised I could still go canoeing – not far and not huge distances away from home but it was possible.

“I stopped looking at what I couldn’t do and found things that I could.”

Due to the physical challenges of having TM, Louise had to resign from her job, but she is now one of the volunteer Convenors for the Spinal Injuries Association’s TM support group and counsels newly-diagnosed people keen to talk to someone who understands.

“It’s enormously rewarding. It helps me get out of myself. I hear people say things I used to say,” Louise said.

A strong advocate of being responsible for your health and knowing exactly what doctors are telling you has also seen Louise read widely about TM, and last year she travelled to the US to attend the Rare Neuroimmunologic Symposium in Dallas, Texas, where she met people from around the world who have TM.

Spinal Injuries Association CEO Mark Henley said TM was 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,” he said.

“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.”

The Spinal Injuries Association supports and empowers 2,000 Queenslanders who have spinal cord injuries, polio and TM. The Association is the Australasian Affiliate of the USA’s Transverse Myelitis Association (www.myelitis.org). For more information on the Spinal Injuries Association, please visit www.spinal.com.au.

Issued 27 April.