Being diagnosed with a chronic illness is a life-changing event, and can often require significant changes to a person’s lifestyle. While this is challenging enough on its own, a lack of public knowledge on the illness due to its rarity can make adjusting to the diagnoses even more daunting.
This Rare Disease Day (28 February 2023), Spinal Life Australia is raising awareness of a rare yet debilitating disease, Transverse Myelitis (TM), sharing the services available to those living with the disease.
TM is a rare disease characterised by inflammation of the spinal cord, which results in damage to the cord. However, the exact cause is often unknown, but it can start with infections such as influenza or immune system disorders that can attack the body tissue .
Most people affected by TM will have only one attack, but a small percentage may have more than one. The disorder can affect anyone, no matter their age or gender with the severity of symptoms often varying on a case-to-case basis.
Spinal Life Australia Board Chair, Gyl Stacey, was diagnosed with Transverse Myelitis when she was just 15 years old.
Ms Stacey said a TM diagnosis, much like other rare diseases and disorders, is a life changing experience on the individual and their family.
“While most people will make a partial recovery, unfortunately those who experience severe attacks can be left with major impairments,” she said.
“Spinal cord damage is something that affects every part of your life from the physical implications to the mental, social, and economic, with the road back to gaining independence often being challenging.”
At first, symptoms may include lower back pain, which can go unnoticed by individuals but can rapidly develop into spasms, chest pain, difficulty breathing, sensory alterations, bowel and bladder dysfunction and weakness in arms or legs, or even total paralysis .
Unfortunately, there is no effective cure for TM with treatments focussed on relieving the inflammation that causes the symptoms .
Ms Stacey says that the symptoms of TM affect every aspect of a person’s day-to-day life, and due to the lack of understanding of this rare condition, having access to proper support is vital.
“The symptoms of TM often lead to the person requiring specialised support services, and because the majority of people aren’t informed on this disease, living with TM can often by quite an isolating experience”.
While around one third of patients will recover from the disorder with little to no ongoing issues, another third will be left with moderate impairments and the remaining third will be left with severe impairments.
This Rare Disease Day (28 February, 2023), Spinal Life Australia is urging the public to learn more about Transverse Myelitis (TM) and the support offered for people living with the disorder.