On November 4th, fourteen members of the Sacramento FSH Society Support Group met at Louie’s restaurant for lively discussion, fun and good Chinese food. We were joined by John Dorsett, M.D. of the University of California, Davis Medical Center’s Department of Physical Medicine and Rehabilitation. Dr. Dorsett was there to answer questions from the group on mobility issues.
Many of the questions had to do with ankle orthotics and why there are so many on the market. The answer was that every patient’s need is different and no one device can suffice for all the different types of problems (stroke, Charcot Marie Tooth, trauma, muscular dystrophy). Working with a specialist can help, but patient preference is extremely important and some trial and error is required to find the right device for a specific individuals need and the need will change with disease progression.
The other discussion centered around scooters. Again, everyone had their idea as to what worked best for them and there is no one size fits all solution.
Our next meeting will be in February. There was a suggestion that we meet on Valentine’s day since we all got along so well, but that was quietly tabled by many of the women as not quite romantic enough. Dr. William R. Lewis, a physician in the Division of Cardiovascular Medicine at the University of California, Davis and board member of the FSH Society will be giving a white board talk on FSH genetics for dummies. Current understanding of FSHD genetics and genetic testing, along with future directions and potential therapeutic targets, will be discussed.
We invite anyone in the Sacramento area to join us. The date and venue will be set as we get past the Holidays. Many thanks to our fearless leader, Karen Dunkerly, for herding this group of cats.
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