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Charcot Marie Tooth Syndrome

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hi


I'm a single adopter with a birth child aged 7. We are discussing with our social worker a child who is under 1 and doing well, but because of family history may potentially have CMT. Has anyone else had experience of this who can give some advice or guidance? we have asked for more information as what we have been given to date is limited, but I'm keen to make sure I am asking all the right questions and considering the possible implications properly.


Thanks in advance


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5 users have supported this.

No direct experience of this disorder but i am an adoptor of a child with complex needs and have another foster child also with complex needs so can give you my experience from that point of view if it helps. If no use feel free to ignore!

The little bit i have seen on this disorder suggests it is a degenerative condition that can manifest in childhood but sometimes not until as late as middle age. It doesnt seem to be life limiting but can significantly affect mobility etc over time.

I guess you need to weigh up whether you are able to cope with mobility issues and physical disability in a child or adult who may be more dependant on you in the long term . It could involve adaptations to your home etc and lots of medical professionals and appointments to fit in.

You would face a measure of uncertainty going forward as there may be no way of predicting the future but to be honest this applies to all adoptions in one way or another.

If i was you i would research as much as you can and speak to the medical advisor etc Also you could make contact with a support group to see if you can get the experience of other families.

Finally it is important to consider what the long term impact could be on your bc as it could impact significantly on his childhood and even into his adult life.

Sorry not any more help on actual condition but just a few things to consider. Hope that some help. Good luck


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15 users have supported this.

Hi,


No direct experience but we have an ad with an undiagnosed genetic condition, what we have found is that support groups make all the difference to understanding symptoms, navigating medical professionals, financial support etc. If you want to understand the condition and family life with it I would recommend
http://cmt.org.uk/


Of the Facebook group Charcot-Marie-tooth which has nearly 4,000 members.


My daughter has neurological aspects to her condition but it's not all doom and gloom and many children achieve far more than medical professionals may suggesr


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7 users have supported this.

My husband has it along with CIDP. If you want to chat about it then ask away. Feel free to PM me and I will get him to go through it with you if this helps


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4 users have supported this.