Just FYI, the success rate for IVF (PGD) can typically be about 30% per embryo transferred. Usually 2 or 3 (sometimes more) are transferred in one cycle. So the typical success rate per cycle would naturally be a lot higher, 60-90% or more, depending on the number of embryos transferred. But this number would vary depending on how many embryos are considered healthy after testing for HD. For examby Stacy - Huntington's Disease Support Center
JudyF, the cost of PGD can be around $9000- $18000. It varies greatly depending on the doctor & lab etc fees.by Stacy - Huntington's Disease Support Center
We tested 9 (all from a single cycle). 5 were gene-positive, 1 was inconclusive, and 3 were healthy. Transferring 3 resulted in twins. I can't imagine how they'd do 2 cycles at once.. I suppose they'd have to freeze the whole first batch and then thaw them during the second cycle to test? But freezing can cause some to become unusable. And you probably wouldn't be able to refreeze them if yoby Stacy - Huntington's Disease Support Center
They could consider doing non-disclosed PGD to have babies free of the HD gene without the at-risk parent finding out their status. You might consider helping them financially with this option if you're in a position to do so. www.HDFreeWithPGD.com Best of luck, Stacyby Stacy - Huntington's Disease Support Center
Congratulations to you both! I wish for you many blessings and happy, happy years to come!by Stacy - Huntington's Disease Support Center
I think it's best to try to help one another while still respecting each other's differences. Of course it's important to consider whether the baby will have a healthy environment. But that's not always clear. I was fortunate because in my case, my family has late onset and I had a very normal childhood with an HD gene-positive mother. She didn't show symptoms until I was out of college. So beby Stacy - Huntington's Disease Support Center
We were given the option to test by amnio but we didn't want to risk the pregnancy. Then after my babies were born, the pediatrician said she would have them tested if I wanted. But after much thought we agreed that it would do more harm than good if they came back HD+. (After they're born - if they tested HD+ would you treat them differently? How would you eventually tell them? etc...) We werby Stacy - Huntington's Disease Support Center
Speaking of insurance, mine was covered only because I fought & found a loophole in the verbiage. They allowed my case to be considered by the medical board and it was deemed "medically necessary" and covered by "major medical", not infertility. But then they immediately changed the verbiage in their contract to not cover IVF for any reason. THEN, a few years later,by Stacy - Huntington's Disease Support Center
Hi digging.deep, I'm Stacy and I'm the author of the HDFreeWithPGD website. If you haven't visited it yet, I highly recommend it! You are also welcome to email me at stacybrook@aol.com with any private questions about PGD or just support! I tested gene-positive for HD in 2005 and after 1 round of IVF/PGD,by Stacy - Huntington's Disease Support Center
Thanks everyone! I appreciate your information and I'm so glad that I can confidently go and donate again! -Stacyby Stacy - Huntington's Disease Support Center
I chose PGD. Your opinion is your own and I have no problem with your expressing it. But for the sake of others who may be considering PGD, I will also present the result of my own soul-searching. No one has proven whether life begins when the sperm enters the egg, or when the embryo implants in the uterus, or when the heart begins beating, or when the child is born (or somewhere in-betweeby Stacy - Huntington's Disease Support Center
Does anyone know if it's safe for an HD gene positive person to give blood? I'd like to donate but I'm not sure whether it's safe for those who would receive the blood. I suppose the same question goes for organ donation... Have there been any studies done on this? Should I decline donation just in case? Thanks, Stacyby Stacy - Huntington's Disease Support Center
More news! I heard back from Stanford HOPES and they confirmed with outside PGD sources that the CAG number is not used in determining which embryos should be transferred in PGD. Here is their proposed revised text for their website (changes are in bold, and the original is in italic): "Since every cell has a complete copy of the genetic code, any one cell will suffice for genetic testinby Stacy - Huntington's Disease Support Center
Good news! Stanford has said they are wrong about testers looking for cells with 35 or fewer repeats. They are saying that "Normal" is actually somewhere around 26-27. But we're still in discussion over the actual PGD testing process. (In my experience, "normal" ends up a lot lower than 26-27.) I'll get back to you about it when I hear more. Stacyby Stacy - Huntington's Disease Support Center
Krista, I agree with you that an embryo that inherits a CAG within that intermediate range (even if it's called normal) should not be considered for transfer in PGD. And in my experience, they WERE NOT even considered. And that's my point here. The information in HOPES does not line up with my actual experience. The only embryos transferred were those that came from the completely unafby Stacy - Huntington's Disease Support Center
P.S. I emailed HOPES about this. I'm hoping they're just misinformed about it.by Stacy - Huntington's Disease Support Center
Hi everyone, I believe that the HOPES group has misunderstood the process. I'll be very surprised and disappointed if I hear that any labs are transferring embryos with any kind of expanded CAG. That would be very unethical. (I'm not even sure it's possible?) According to my personal experience with PGD, the only embryos that were considered for transfer were those that came from my unaby Stacy - Huntington's Disease Support Center
WOW WOW!!!! I'm SO excited for you, Luz! Babies are such a blessing and it is incredible that we can protect the next generation with PGD. Enjoy every moment!by Stacy - Huntington's Disease Support Center
It is awesome to read all of these positive posts and recognize how aware our community is of PGD! When I started the process 5 years ago, no one knew much at all about it and I had to do tons of research. Hooray for all of you courageous parents who are protecting your kids!! My twin girls will be four next month. They are HD Free. -Stacy www.HDFreeWithPGD.comby Stacy - Huntington's Disease Support Center
Hi there JV, My husband and I have healthy beautiful HD-free twin girls after doing IVF/PGD. I tested positive for HD after we were married and we decided on PGD. Please check out my website for the full story: Or you can email me if you have any questions: stacybrook@aol.com Best wishes for your upby Stacy - Huntington's Disease Support Center
Hi Raven, I'm Stacy and it's my website that was recommended to you above. I would love to try to answer any questions you have about PGD. Feel free to email me at stacybrook@aol.com. Take care, Stacyby Stacy - Huntington's Disease Support Center
fender, Even better that you are able to do non-disclosing. It would have been much easier to deal with it all had I not also had to handle the test result. Best of luck to you! I'm hoping for twins on the first try!by Stacy - Huntington's Disease Support Center
Hi fender, I have experience with PGD - my twin girls are HD Free because of it Please email me at stacybrook@aol.com if you have questions. And you might want to check out my website: www.HDFreeWithPGD.com I was able to get coverage by my insurance because they considered PGD "medically necessary&quby Stacy - Huntington's Disease Support Center
Hi Julia, I was tested before having kids, and my test came back positive. CAG 42, family history of late onset. Because of IVF/PGD, I now have healthy HD Free twin girls (who just turned three.. my how time flies!) If you are interested in learning more, please visit my website. It talks very candidly about my experience. www.HDFreeWithPGD.com I am also available to answer any quesby Stacy - Huntington's Disease Support Center
Hi Maria! Welcome to HDAC. I am so sorry to hear of your family's bad news. You have a lot of courage to face it with such strength and wisdom. If you are looking for information about IVF/PGD and having kids that are HD Free, please feel free to visit my website www.hdfreewithpgd.com or email me at stacybrook@aol.cby Stacy - Huntington's Disease Support Center
Hi Marsha! As you know, I tested before starting a family because I wanted to protect my future children. I would not have tested otherwise. Stacyby Stacy - Huntington's Disease Support Center
Hooray! Now our researchers can have more funding available to find out how helpful this research might be for HD! HOORAY FOR MORE HOPE!! And may the Lord bless the hands of our wonderful researchers! From whitehouse.org: Moments ago President Obama marked a monumental moment for hope with an audience of Nobel Laureates, leaders of the faith community, and patient advocates.by Stacy - Huntington's Disease Support Center
Time out for a commercial break (just kidding! heehee) If you have HD or are at risk and thinking about having a baby, please consider PGD as one of your options. I did and my kids are healthy! www.hdfreewithpgd.com -Stacyby Stacy - Huntington's Disease Support Center
Welcome to the site! I got LTC before testing but it was through my husband's work. It's a policy for families of firefighters. I am sure there are policies out there who won't know or care about the at-risk status. Ask at your or his work, I think they're usually a bit less strict. Stacyby Stacy - Huntington's Disease Support Center
I tested at my local Center of Excellence and paid cash so it wouldn't go through my insurance. Although I don't see a Center of Excellence in MI, there is a website & chapter there! It looks like they have a social worker who could probably help you out - maybe you could go through that group for testing? I recommand calling & asking. Here's the website:by Stacy - Huntington's Disease Support Center