Name : Joyce Ways
Adult: 68 years old
Areas of body affected: Both feet, legs, left hip
State: Seattle, WA
e-mail : firstname.lastname@example.org
was diagnosed with melorheostosis 3 1/2 years ago, but looking back I
was a secondary school vocal music teacher for 40 years and as such
was diagnosed with Melorheostosis when I broke a couple of toes, and had
have begun to use a cane for short distances, and a walker (with a seat)
am thankful, as a musician-pianist that it has not affected my back and
common sense told me to stop taking a calcium supplement, and since the
message my leg muscles to help take the "knots" out.
I do have a lot of
am always finding alternative ways to
do the things I want to do. This
have not met anyone else with Melorheostosis.
In fact, I have not seen
would appreciate the opportunity to email with others, as I have an
To update my condition:
I had surgery in May to get my big toe back where it belongs and to lengthen the tendons to some of my toes. I wrecked my foot by challenging it too much on a trip to Mariner Spring Training in Arizona. Neuropathy in my feet contributed to the damage, as I could not perceive what was happening. I am getting past the surgery OK but at a visit to a pedicurist, my heels got burned very deeply (again I couldn't feel what was happening). Now I am trying to get over the burns. It has been a long process. The moral of my story is... be very protective of limbs affected by Melorheostosis. My doctor keeps asking me how long it has been since I was checked for diabetes, since the condition of my feet resembles that of diabetes patients. I have been checked numerous times, and come up clean of diabetes. Is anyone else having this problem?
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