Re: AFOs & doctors in Sydney

[Guest guest]

Hi Robyn,

Although I haven’t introduced myself properly to the group (which I will

do when I get home from work and can look up the exact details of

things), my husband and two of my four children have CMT. My 19 year-old

son is the worst affected and was diagnosed when he was around five. We

are from Wollongong, which is about an hour south of Sydney.

The best person to see regarding genetics is Garth Nicholson at Concord

Hospital. He is the guru of CMT genetics in Australia, a little

eccentric as all good professors should be, but very helpful.

Westmead Children’s Hospital have a great collection of CMT experts,

headed by Professor Ouvrier (a neurologist). They run a clinic where all

the experts are in the room at once – neurologist, podiatrist,

physiotherapist, bone surgeon, etc etc. looking at your child. You do

need to book this some months beforehand, but it is a wonderful

experience to have all those specialists in the room at the same time,

including Dr Burns from the previous post. Westmead Childrens

Hospital also has an orthotics department (for the AFOs), where we have

had many years of excellent & caring service. The cost of the clinic was

covered by Medicare so I’m not sure how you would go if you’re not an

Australian resident. The hospital would be able to advise you.

My son who is now too old for the Childrens Hospital now sees

Reddell at Concord every 6-12 months who is also excellent.

Hope it all goes well.

Regards

Suzanne