Name

Name : Joyce Ways

Adult: 68 years old

Areas of body affected: Both feet, legs, left hip

City, State: Seattle, WA

Personal History:

I was diagnosed with melorheostosis 3 1/2 years ago, but looking back I can recognize its effects as much as 16 years ago.

I was a secondary school vocal music teacher for 40 years and as such spent a lot of time on my feet, usually in 2 inch heels. I was not good to my feet! In 1985 I had a hysterectomy and began noticing a marked decrease in the amount of time I could spend on my feet - either standing or walking. All my life I had been an active walker-hiker and I began berating myself for giving in to my "laziness". I exercised, but continued to deteriorate. I retired from teaching, but continued to substitute until that became too much for me. Now I teach one afternoon a week at a local Junior College.

I was diagnosed with Melorheostosis when I broke a couple of toes, and had x-rays taken. These showed the disease involved my toes, heels and ankles on both feet. Numbing began shortly after the diagnosis. Now it is creeping up into my shins. Worst of all, it is affecting the muscles in my left leg so that I can walk only a block without having to sit down and let my leg muscles re-oxygenate.

I have begun to use a cane for short distances, and a walker (with a seat) for longer efforts. My main object in life at present is to stay on my feet.

I am thankful, as a musician-pianist that it has not affected my back and arms. I am no longer able to play the organ as my feet can't feel their way around the foot-pedals.

My common sense told me to stop taking a calcium supplement, and since the rest of my bones show no sign of osteoporosis. I feel it is right for me.

I message my leg muscles to help take the "knots" out. I do have a lot of stabbing pain in my feet, particularly at night when I have nothing else to distract me.

I am always finding alternative ways to do the things I want to do. This summer I took a 2 week cruise tour to Alaska with some help from my daughter. I'll do what I can for as long as I can.

I have not met anyone else with Melorheostosis. In fact, I have not seen a physician who had ever seen it before. Helpful information has been totally lacking. I do hope that we can help one another on this web site, and that doctors will get involved.

I would appreciate the opportunity to email with others, as I have an "email-only" device which does not allow me to view websites at this time. Exchanging emails from others with melorheostosis would be wonderful.

UPDATE: 8/7/02

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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