Eleanor was diagnosed very late in the UK with CMT. It took the medical establishment 20 years in the 1950’s to determine exactly what Eleanor had and this was only after Eleanor had broken her ankle bone whilst running to catch her school bus, as a teenager.
Diagnosis ranged from polio to muscular dystrophy at the time and left Eleanor frustrated and forlorn. It was only in the 1970’s that CMT was finally confirmed and proper treatment could ensue. We have to remember that in the 70’s, awareness and knowledge of CMT were even more limited than today.
Although not certain, Eleanor believes that the CMT was passed onto her by her father, whom she vaguely remembers walking with a limp. Disability during that time was regarded as a curse and any reference or mention was swept quietly under the carpet.
It is even more difficult to pinpoint her father’s genetic relationship with CMT, due to the lack of information available. Eleanor’s sister, who is almost 7 years younger, also contracted the disease but has taken a different approach to it. She refuses to acknowledge that help is now a reality and groups actually get together to talk about their experiences to assist each other in any way possible.
Just as with her father, isolation seems to suit her fine. Unfortunately, her son also has CMT, whilst her daughter managed to escape it.
Eleanor remembers that she was bullied at school as she was never good at sports and always clumsy, due to the instability in her legs and feet. Bullying was not taken as seriously back then as it is now.
The thing that shocked her most was in the late 1960’s when a neurologist flatly insisted that she should not have children because of her disability. This seriously affected her relationship with men and drove her to seek independence through her profession.
Eleanor did eventually tie the knot, with Alan, in the early 1980’s but they took the neurologist’s advice, not because they were afraid for their children, but because, by then Eleanor was in her late 40’s and severely debilitated by CMT.
The present consciousness about CMT is still very poor and Eleanor can remember only a handful of occupational therapists, physiotherapists, and doctors who really knew what CMT was about and how to go about treating it. It is only genetic neurologists who seem to know anything much about CMT.
Eleanor worked relentlessly as a volunteer with CMT UK, a support group which offers anyone affected with CMT information and assistance. During the years she experienced the affection and efforts of CMT UK and received various aids, carers, and chiropodists, making her life more comfortable.
Eleanor passed away in 2011, after having been restricted to a wheelchair for some years. Her courage and determination, especially through her adversity with late diagnosis and terrible medical advice have made her story live on.
Eleanor’s surname was not published for privacy reasons. You can read the original story on the National Genetics Education and Development Centre.
Image source: Pedro Ribeiro Simões on Flickr