Hi All,

Apologies that I am posting a question about IVF here but the Open Topic section seems to get the most traffic. I have posted this question in the "Carrier" section as well but, again, not as many viewers. I came across PGD, which would essentially take a KD free egg from a woman and fertilize it via IVF, allowing or helping with having KD free children. While this is terrific/hopeful news, I am assuming there is a downside as there isn't really any talk of this as an option. Does anyone know any more about this? Any thoughts or information would be so appreciated.

Best,
Rachel

Hi, Rachel. I think the combination of PGD and IVF is common enough now that fertility specialists should certainly be presenting this as an option for carriers. As for a down side, there are risks to the mother that go along with IVF, and the process of retrieving and testing eggs is complicated. There's also the cost (many insurance plans do not cover these procedures), and some folks have ethical objections to both IVF and PGD. I don't think any of these issues should keep you from pursuing more information. A fertility specialist will be able to give you a more realistic sense of the risks and put them in perspective. Good luck.

Thanks so much for replying, Deb. My husband just got diagnosed and we still would like to have children. I would feel much better knowing that if we had a daughter she would have options when she wanted to have kids. And hopefully once that time came (30 or so years from now) we would be in a much better place with everything. Thanks again for your input.

Hi Rachel,
I saw you posted this a few months back. My husband has KD and we were aware of it so we used PGD to conceive. You may already have all of the answers you needed or have made a decision. If you are still considering it or have any questions, I would be glad to share my experience with you. You can email me directly at Lindafprice@gmail.com

Hi all. My fiancé (who is a carrier of KD) and I are planning to have a family and are looking into using PGD and IVF to help reduce the risk of passing this to our children. I can see that others on this thread have been looking into this too, albeit several years ago. I'd be really grateful for any info you're able to share on this, for example more info about the process, links to any available online resources, and if you know of any cases where it has worked effectively. Many thanks and best wishes. Henry

Hiya Henry,
Congrats on wanting to start a family as well as trying to mitigate the spread of the disease. You can see from the thread, that my husband has the disease but I was still curious about what it would mean if we had a girl and what her options would be if she wanted her own biological children. But I think I can still be of some help because as it turned out, we had to go through IVF, (one of the cruxes of the disease can be that the sperm doesn't have the best swimmers). Because I wasn't a carrier, we did not have to go through PGD, however, we were asked if we still would want to go through a pregnancy if the embryo "that took" was female. We said yes. We knew she wouldn't suffer from the physical aspects of the disease and, hopefully, in 20-30 years time, she would have even better options than we have now for KD-free children, if not a treatment for KD altogether.
I am not sure how much you know about IVF, but there are so many people who have gone through it, so there is a plethora of information out there and most people, for many reasons, get the embryos screened. IVF poses its challenges, (mainly how many embryos last the first few days from fertilization, how many of those are healthy and, finally, how many are KD free)but have served as a healthy and wonderful solution when nature needs a little assistance.
Hope some of that helped and was encouraging. If you have any other questions that you think I (or anyone else) may be able to help with, please ask.
Best of luck!
Rachel

Henry,

If you use facebook the "Kennedy's Disease Patient group"
https://www.facebook.com/groups/1603870736575430/
has a lot of members and would be a good place for your post. I know one member there, Heather Montie, is a KD researcher and a carrier who has gone through the process of having multiple embryos started and screened for KD to select for implantation. I think she now has two KD free children from this process. I also believe it was expensive and it is difficult to get much if any insurance coverage for major parts of the process. She has given presentations on this at KDA conferences and may have notes to share.