Transverse Myelitis Meeting

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.

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.