Charcot-Marie-Tooth UK
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Choices for starting a family

After 18mth of fighting I finally had the phonecall of a lifetime yesterday. The HFEA (Human Fertilisation and Embryology Authority) have granted the licence to all people with CMT Type 1A to be able to carry out pre-embryonic genetic diagnosis (PGD).

This means that you are now able to go through an IVF process and test the embryo before implantation for CMT Typa 1A, irradicating the 50/50 chance of passing on the afliction to your child.

This is a massive victory, not only for myself and my husband and our future child,, but for everyone else with Typa 1A as well.

You may not want to go through this process on ethical grounds, but YOU NOW HAVE REAL CHOICES WHEN STARTING A FAMILY.

I was heartbroken by blogs I read from couples that had decided not to have children because of the risk of passing on the genetic condition, so I hope that this news brings hope to some people.

8 Replies

For you I am truly pleased. It may not be everyones choice to test and know. But that is a choice, and one denied to anyone until now. May I wish you and your husband the best of luck, with whatever choices you make. Good luck


Well done! I was involved in the application process and I'm glad it worked!! It's not a choice I would have taken, if it had been available when I was having kiddies - I opted to go for it regardless, and both my children are affected. For me, that's no big deal, and it isn't for them either.

However, we all need to make our own personal choices and it's great that this one is now available, if required.

If you're going to take up the option, do let us know how you get on!



Sorry but I am unclear about your final objective's are in this matter ?

What happens if your pre-embryonic genetic diagnosis (PGD) test on your embryo confirms that it does contain CMT Type 1a ?

Do you then destroy this defective embryo, and create another, and another until you eventually produce an embryo that is totally clear of the defective gene, PMP22 /17p11.2 that one, or both parents could pass onto their offspring ?

Whilst I must respect your choice as parents to make your own choices, I feel that you both are unwilling to conceive your child until the right result that suits you comes along ! ! !


Hi Everyone

I'm not going to get into discussions about whether people approve of this or not; or their views on me, my family, or my situation.

The spirit of this site is 'to share, inform and support'. The purpose of the blog was to inform people that there is now another choice to consider. Hence the title of the post 'Choices for starting a family'

As stated in my original post, I fully acknowledge that this choice is not for everyone for - various reasons. Whichever path couples out there with CMT choose to take, I wish each and everyone of them the best of luck and happiness


Hello all.

I'm new to the site and the title of this blog caught my eye, as me and my partner are currently trying for our own family.

We are going to go for genetic testing as I have CMT myself and my sister has CF so we just want to know the risks or % of having a child with a medical condition.

I think this is good news just because I would rather know what I am getting and how I can prepare myself and others around us, so that we can be the best support network for our child.

Good luck in your quest of starting a family x


Both myself and my eldest son have CMT but his wife has just given birth a beautiful baby boy and it appears that he is clear from the CMT so it is obvious that it does not always pass down through the genes - this depends on whether you are compatible with your partner's genes - my eldest son has CMT but my youngest son does not but the father of my youngest son is different to the father of my eldest son so just shows that this is correct


CMT Type 1a is passed on at a 50/50 chance rate. each time you get pregnant, there will be a 50/50 chance of passing on the CMT to the child. The compatability of your partner's genes to yours don't have an influence on the chance rate as f ar as I know. My 2 older brothers are clear from CMT, but I have it, and all 3 of us have the same Mum & Dad. I'm sure the CMT website has sum good facts sheets on how different CMT types pass down through our genes. I only really know about my own type, so don't want to give the wrong infomation if you have a different type of CMT to me & my dad.


This is fantastic news ! Again not getting dragged in to the discussion of the rights and wrongs, but to have the choice now is a step ahead for those that want to explore this avenue.

My partner and I have decided long time ago not to have children as the pattern I have (CMT X) leaves daughters as carriers and we never wanted to burden children with the choice later in their lives of having children or not with the risks of transfer.


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