Charcot-Marie-Tooth Disease
Charcot Marie Tooth Type 1a
I was born with CMT 1a in 1966 but not officially diagnosed until 31 yrs later at Walton Neurosurgical Centre, Liverpool. I had a Bilateral Achilles Tendon Release Op at the age of 2yrs +. at Alderhey Children's Hospital and had annual reviews with Orthopaedic Surgeon until the age of 16. I coped very well with my condition although remained very clumsy and uncordinated through my childhood and teenage years, never quite understood why I was not as good as everyone else in Gym classes / PE lessons etc but just got on with it for many years frequently tripping and falling and injuring myself.
Discharged myself from the care of the NHS at the age of 16 (typical teenage rebellion ......told them I was fed up of parading up and down the ward in my knickers and bra so they could assess my walking pattern and was embarrased of having to do this in front of many Doctors and young medical students in the 1970's/80's). Then slipped the net for many years (my own fault) coped reasonably well and led normal life married, worked full time for most adult life, had 2 children and returned to work when my children were nursery school age. Thankfully my children do not show any symptoms of CMT whatsoever and must have inherited their father's good genes (feet are normal and they are very sporty so definately do not take after me!)
Due to frequent falls and many injuries / accidents I was referred to Neurologist in 2001 where I was given DNA test and diagnosis of CMT Type 1a - given wonderful helpful advice Knee Arthroscopy and custom made splints by Orthotist. The last few years have been quite a struggle physically! At the age of 48 have just had a total hip replacement which has been successful! I rely on my wonderful splints to get around and use a crutch when outdoors for support/extra confidence. Have had to cut down on working due to my condition (pain and fatigue etc) but remain in work on a part time basis 2 days per week in a Hospital as a clinic secretary.
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