A couple of weeks ago I had a very interesting time at the
Transverse Myelitis Awareness Day at
Spinal Injuries Australia at
Woolloongabba.
It was very good to meet other people there who also have TM and find
out about their history.
One lady about my age has had it since she
was 12 years old.
She lived in Sydney at the time and
the doctors at the hospitals were
unable to give her a diagnosis.
Instead her parents took
her to the Mayo Clinic in the USA to be diagnosed.
Another man got it in the 1970s and again it was difficult to diagnose.
I was interested to see how
the condition manifests itself differently in different patients.
It seems there is no “typical” case. The chances of getting it are between 1 and 8 in a million.
We had a live video link with Sandy Siegel from the
Transverse Myelitis Association in the USA, which has been going for 20
years.
That is how long Sandy’s
wife, Pauline, has had TM and the reason Sandy
set up the TMA, because it was difficult to
find information or help about the condition.
Twenty years later TM patients benefit greatly from all the voluntary
work Sandy has
put in to the TMA.
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Some of the members who attended. |
We also watched Dr Benjamin Greenberg, Director of the TM and NMO
Center at the University
of Texas Southwestern in Dallas. He brought us up-to-date
on what is happening with research. He
said early diagnosis is critical to
ensure the correct treatment is administered.
Guillian-Barré Syndrome was the most common misdiagnosis.
It was interesting to
see all the speakers and also to
meet other people with TM to learn
about their lives. I met Louise Remilton, the Transverse Myelitis Group Convenor who is
also in Queensland. I look forward to
learning more about TM through the TMA and from members of the Transverse
Myelitis Group.