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What should I do before I test?


What Should I do before I test for Huntington’s disease?

Katie Jackson: Our next question is for Lisa, what should I do before finding out my HD status? I want children, but I want to be sure I do everything I should first.

Lisa Mooney: This is a good question. When I talk to folks, we recommend that people sort of getting things together, meaning they can do advanced directives and living wills if they want to, depending on their age and situations. People should look into supplemental insurances, like life insurance, long-term care insurance, and any supplemental disability insurance that they may want should they be positive for Huntington's disease. And to be honest, those things are good for anyone to have, whether you're at risk for Huntington's or not at risk for Huntington's because they can help support your family in the event of a death. They can help support a family if there's a person that can't take care of themselves in the home, but maybe the other adults in the home need to go to work to keep the house and food on the table and all of those things. So we recommend looking into that now. The problem sometimes comes up with, depending on your age, if you're 18 and wanting to test, and you're looking into long-term care insurance, it's kind of red flag insurance that is like, wait, why are you 18 looking for this. That can be hard to get some of those things, depending on your age. Talk to a financial planner, and even if you don't qualify for things like life insurance, car insurance, you can definitely, look into the future, whatever that future holds for you. You can put money in the different retirement accounts or the various investment accounts and save for your future. But you should look at that. The other thing is you should look into your options, whether you test under insurance, whether you test anonymously, whether you test under your name, but pay privately, Where you want to test, like what center, or what doctor you want to use, you know, find the team that's going to be most helpful to you. Do some research about, is this something that you want to do, and who's going to be the best place to help you do that? Most people, we talk to Mara, Dr. Wheelock, you can tell me if I'm wrong, but most people we talked to, I feel like they usually say that they've sort of been thinking about testing one either for their whole life or two, a lot of times they'll say they've been researching it and finding how they want to go about doing it for about two years. So, if you imagine that's kind of a long time. You're not thinking about testing every day for two straight years, but that's how long sometimes it takes people to do their research, to talk to their loved ones for additional support and opinions. Also, can sometimes take that long to find the supplemental insurances that fit within your budget and that you want to, set up for yourself so that you can make sure that your future family or that your current family is taken care of in the event, something does happen to you. I think it's much about children too that they want children. Oh, yes, yes, yes. Thank you. So, for children, this actually, it would be a better question for Mara. Still, for children, you need to look into your different reproductive options, the best person to talk to about that is a genetic counselor, who knows about Huntington's disease. They can speak to you about your different genetic options or reproductive options. You can talk to a social worker, but I don't speak nearly as eloquently or intelligently about it as Mara does. But I've stolen some of her stuff over ten years so I can speak about it, but yes, that is also something, and that takes a long time as well. So that could be in the two years where you are looking up the IVF PGD process. You are looking up fertility clinics that can do it. Do you want to know your gene status before doing those reproductive options? Are you interested in adoption? How much is that going to cost? How much is IVF PGD going to cost? You know, all those things. It is also okay to decide that we're just going to start a family the old-fashioned way, if you will, that is okay too. But you just want to do your research and make sure that you do pick the best option for you. Mara, do you have anything to add about the PGD finding reproductive options?

Mara Sifry-Platt: I think it important to recognize that, you know, the genetic counselors out in the Centers of Excellence, we certainly are versed at speaking about this issue, but when it comes to the nitty-gritty of what is required to go through the PGD process, it is best to talk to the genetic counselors who work at those facilities because they can give you the details about some of the labs one grandparent's blood. When they do PGD, they do not count the CAG's, and they're doing a different kind of analysis. Like Lisa said, getting as much information as you can ahead of time, to think about it. And what are the other options I just want to mention real quick too, you know, our, that in today's world at using sperm donors and egg donors is certainly something that is much more common and adoption remains an option, as well as, prenatal diagnosis, doing nothing, and PGD.

Terry Tempkin: I was going to jump into Lisa, to tag-team on your comment about putting resources together. I think back to when my children were 18, and when I was 18, it is hard to be on the page of life planning at that age. When I was working with families who were doing predictive testing, I frequently was impressed, at, I know that that's a hard leap, but that age to think, well, what am I planning for 50 years old? Because someone who is 18 does not know their career path, they may not know if they are going to college. There are so many unknowns at that age that it is sometimes is difficult for them to relate to, okay, get this lined up. In those instances, it's beneficial if someone is in that age cohort 18, 19, 20, whatever and hasn't made decisions about their lives and is thinking about, you know, the kids and the testing and the insurance and things like that. Go to a trusted person who is a little older than you, that if it's your parent, that if you can confide in that parent or it's an older sibling, or it's a good friend. Still, somebody who may have a little bit more of life experience to help coach you through that, to help talk through, those ins and outs, because it may be, you know, asking a lot in that age cohort to act like the 35-year-old who has three kids already, right—in their careers already established. And so, I think that reaching out, in that's the social worker, genetic counselor, or, your trusted friend, Get some help and support if that seems like a big leap to you.

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