Hi everyone.

I was diagnosed this year with having very mild symptoms of x-linked (they think) CMT type 2. My brother has it much more severely than I do.

As a result of this my (new - August 1st) husband and I have made the decision to begin the process of PGD and then IVF rather than conceiving naturally, because of the risks associated. UCLH can't confirm what the risks are because the variation my family have is so rare that they haven't seen it before, and therefore can't say what the outcome will be for children.

These were our choices:

1) conceive and give birth naturally and have either a child whose condition is worse than yours, the same or better (?!);

2) conceive naturally, have a test at 12 weeks to determine whether the child has CMT or not then make a decision whether to terminate (this test also carries a risk of terminating the foetus);

3) go through PGD and IVF with a minimum wait time of 8 months (if there are no complications, and a maximum of 2 years).

Has anyone else gone through/is going through the process of PGD and IVF at the moment? I've been referred to Barts, but their current waiting time to acknowledge response to a referral is 10 weeks. UCLH have said they'll do a follow up call in 3 months to see if Barts has contacted me...

So frustrated at the wait, especially when the chances of conceiving with IVF are so low anyway (25-30%).

If anyone can share their experiences, we would be very grateful.

Thank you.

J (and P)

What is PGD? Would you choose donor eggs with that route?

What are the odds that they’ll be able to find an embryo that does not carry your families variation? It seems like a lot to put yourself through. Not everyone tolerates the IVF cycles well either. They can be very painful, emotional, etc especially so if over stimulated. They do list some general stats, but seem to not have a lot of info to go with yet.

They haven’t said what the odds are. I know that it can be done because (coincidentally) a local girl went through the process and had a healthy baby boy.

It doesn’t leave us with much motivation with the low percentages, but we feel that morally we don’t have a choice apart from PGD and IVF

What about donor eggs? I had a friend who’s husband had a horrible accident and no longer produced sperm, so they used donor sperm from within his family. Is there a family member or close friend who would donate for you? It saved a lot of cost having a donor of your own, and gives some extra peace of mind. I would have done myself if I hadn’t found my body to be such a catastrophe! No one wants dusty eggs.

As far as we know there aren’t any issues with either our eggs or sperm. Should there be, then we may have to consider other options, but for the moment PGD with IVF is what we’re having.