Hi everyone,

I'm new - registered 5 minutes ago. Thing is, I'm from a tiny little country with only about 250 people diagnosed with HD, and the available discussion board gets one post every two years. Pointless.

My husband is at risk for HD. He's 38, and has no symptoms. We want children. We're considering testing.

I feel so incredibly alone in this sometimes, and I desperately need someone to talk to. I need a community. So I'm here.

The forum lay-out is a bit confusing - if there's already a thread for worried wives or other relatives, please let me know.

Welcome! A good place to start would be the Testing for HD link at the top of the page. That will provide you with some good information and a number of links to stories by folks who have been in the same position you are.

Will

Welcome. We have lots of worried people come on here all the time. I'm sure others will respond to you.

Welcome! There are people from multiple different countries here, mostly US, Canada & United Kingdom, but I also remember people from Italy & Australia. Where are you from?

There aren't separate areas of this forum for people in different situations, but the articles are sorted as Will just mentioned.

I wish you and your husband the best. I think you are smart to want to learn about your options for having healthy kids. Having your husband test negative, is of course the best case, which we'll hope for! But if he/you decide he doesn't want to test, or even if it is positive, there are still ways to have healthy kids though it gets more complicated.

But you've found the right place to get both info AND support.

Welcome to HDLF! It's just fine to start a new thread about any topic. We do it all the time.

I'm glad you found us but of course sorry for the reason you need to be here. Steve and I have two daughters at risk so we know the anxiety around the issues of testing.

I live in Norway. Testing, CVS and PGD is free, but exclusion PGD has only been given once to one couple a few years ago, and will probably not be granted again. If we were both younger, I would fight that decision, but as it is I don't feel I can wait the time it takes to battle authorities before I start trying to get pregnant. And since my husband is 38, it would be good to know more about our future. I hope he'll decide to get tested. I hope he feels safe enough to do it. The testing process is long - we have an appointment for the first session

Going abroad and paying for exclusion PGD is an option, but expensive. Could cost less than our wedding, though, so maybe.

The way I see it: My husband and I can choose to go through something really hard now, to spare our children, grandchildren, great grandchildren from ever having to worry anout this. I think it's worth it.

I'm so happy I found this forum. I can't believe I didn't find it earlier, would have spared me a lot of grief the past three years.

Welcome Red. . . There is also good stuff buried in the thread. You can search out key words and so forth in the advanced search area.


Pete & Laura

Red-

perhaps the government health services would pay for your IVF, and allow the PGD to be done remotely, and paid out of pocket?

for my husband and myself, our health insurance in the US pays for the IVF (because we have struggled with fertility as well), but the PGD we pay for. and its done about 1,000 away from our IVF clinic (dont ask me how but i believe through couriers and fedex).

noreaster: Good tip.Thank you. I will ask if that's possible when we have our consultation ("genetic guidance", as they call it, first step of the testing process but useful whether you want testing or not) in January.

We've had an earlier consultation, but weren't ready to continue the testing process and decided to start from scratch now. The doctor we first met knew NOTHING, I had googled my way to a lot more knowledge about HD and reproductive possibilities than what she had, and we were even misinformed by her regarding when CVS is done (she said at 18 weeks pregnant). I've complained and we've been given a new doctor with actual HD experience this time. Yay competence!

When my BIL (at risk) and SIL had their consultation four years ago, noone told them about exclusion PGD, which really angers me. It would have been perfect for them, they're younger than us and chose to simply have children and take their chances. They would have gone for exclusion PGD if they knew it existed.

I'd really like to a pick a fight with the government on the exclusion pgd issue - only about 10 % of at risk Norwegians choose to test, many choose to have children anyhow. Giving people the option of securing their children without knowing their own status might be expensive, but I believe it will save us a lot in the long run. It is often good to fight these issues from a personal case standpoint, through the process of application, refusal, complaining and appealing and media hassle, but I'm politically active and have other options to try and get the law, or practice of the law, changed on this. If I have the time or energy.

I visited Norway in 1990 courtesy of the US Marine Corps. I fell in love with your country and the people. I recall the city of Trondheim was celebrating it's 1,000th birthday that year. That put things in perspective for we upstart Americans. :-)

Will

Haha Will, that's sweet