Location: Dudley, UK
IVF or egg selection as a carrier
Hello my farther Neurology Professor told him that a hospital in London (UK) is running a programme for carriers. It is a form of IVF, to select a KD free egg, fertilise and then re-implant in the womb.
Have you heard about this?
Do you know where I can find information about it?
I don’t feel I need to see the Neurology Professor just yet as it is just an enquiry at the moment.
Any info would be welcome!
I did a little google-style digging after reading your post, and I thought I was onto something when I found this.. (select first search find and open as PowerPoint). I didn't really understand it all (out of context I guess) but slide 15 mentioned Kennedy's.
I then had a search within the Guys' and St. Thomas' website for Kennedy's alongside IVF, but found the search very difficult to decipher. My dad recently did an experiment (only concerning sufferer's, not carriers) at UCL in London, so I'll keep my eyes and ears open for any doctor-y/experiment news. Here's hoping.
Wow did'nt realize that could be done!!!!!!!!!!
If you have more info on egg selection could you foward it on to me, as we are in the process of trying for a child, and if egg selection is an option that would be a huge weight of our minds
I will pass this question on to our KDA Board of Directors.
I have just seen your post. My daughter, a carrier, used IVF and PGD (preimplantation genetic diagnosis)to ensure that a Kennedy free embrio was implanted. She now has a Kennedys free son. I am so happy that Kennedys in my branch of the family is finished. This is a first step because while the procedure enabled her to deliver a Kennedys free child, those of us who suffer still await a cure. I will be discussing our families experience at the KDA Conference in November.
I am just curious why this procedure isn't more public knowledge? If it was, I would assume doctors would go over this as options if people wanted to have children. Thoughts??
Any family with the defective DNA should consider discussing the opportunities and options with a genetic counselor. A counselor is most qualified to review what the defect means and how it can manifest.
Since I have the defect, I am a little biased, however. Being that symptoms do not show up for 20-60 years in a male and might never show up in a female, researchers will probably have a treatment by then. Of course there are no guarantees in life.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614