Hi Shane, It sounds like you've experienced a completely unnecessary waste of your time and I imagine this has been quite stressful for you too. It shouldn't happen - are you in contact with the Huntington's Disease Association in Northern Ireland? Here's their wbesite: They should be able to support you with this case. I'd encourage you to make contact with them. Take care, Mattby just1moreperson - Huntington's Disease Support Center
Sure Judy, the possibly difficult road of having children HD free has a fantastic prize at the end of it if everything goes well. But it doesn't mean HD is out of the equation. Most people seeking a HD free child will either be at risk or tested positive themselves, so HD will likely still impact on life. But of course, the more people in the family without HD the better. I am one of those peoby just1moreperson - Huntington's Disease Support Center
It is always the individual/couples choice as to what they do regarding having children at risk or not. Sure, decisions people make impact on others, particularly other family members as Marsha pointed out. But that doesn't make it their decision, the final decision should always remain with the individual. All we can do is provide people with the facts around having children and the options avaiby just1moreperson - Huntington's Disease Support Center
Haha Yea, that was a nice surprise... Hopefully be there in the physical sense next time! Mattby just1moreperson - Huntington's Disease Support Center
In summary, we all see HD differently and we all make different decisions. That is life. Some people get tested, some don't. Some get tested young, others when they are older. Some people have children at risk, others are determined not to. Some children may be annoyed their parents had them at risk, others will be understanding of the situation their parents found themselves in. Some people wby just1moreperson - Huntington's Disease Support Center
So pleased to hear that you and Joe enjoyed yourselves and got a lot of positivity out of the convention! I hope to be in Florida next year! Mattby just1moreperson - Huntington's Disease Support Center
Just to reassure about HD Buzz, it is very reliable site for HD research updates. HD Buzz has been hugely successful since launching 18 months ago. It is supported financially by many HDAs globally. The person who founded the site is not only a HD researcher but a family member too. It is available in many languages and viewed by the HD community worldwide. Certainly a very good and much-needed rby just1moreperson - Huntington's Disease Support Center
Hi Crayola, As far as I am aware you do need the DNA of the affected grandparent to do the exclusion PGD process. I did research on this when creating the HDYO section on having children and that states that you do need the grandparent's DNA. However, looking at HDBuzz's article on the same topic, they suggest the process can be done without the need for DNA from the grandparent. So I'm noby just1moreperson - Huntington's Disease Support Center
Hi Kag, Has your daughter spoke to you about this incident since? It sounds like it was a big shock for her, has she seen people with disabilities/conditions before? Mattby just1moreperson - Huntington's Disease Support Center
Great newsby just1moreperson - Huntington's Disease Support Center
Very normal not to sleep the night before. Take things easy. Mattby just1moreperson - Huntington's Disease Support Center
This is great news! HDbuzz also covered it the other day: Look forward to hearing more Marsha! Mattby just1moreperson - Huntington's Disease Support Center
Hi Will, I got to 11 marathons in the end and unfrotuantely picked up a pretty painful injury which has stopped me doing much since. But we raised plenty for HDYO is the process and it all helped launch the website Mattby just1moreperson - Huntington's Disease Support Center
Thank you very much for your feedback, I'm really pleased you like the HDYO site. We've had such a great response to the site in the first week, with over 10,000 page views. There's also been a lot of support from HD lay associations worldwide and HDYO will continue to create material for young people impacted by HD. Mattby just1moreperson - Huntington's Disease Support Center
HDYO is an organization set-up to support young people around the world impacted by HD. The website contains easy-to-understand, educational information about HD for kids, teens, young adults, parents, JHD families and professionals. HDYO has been 18 months in development, we hope you like the website and the resources available on it. HDYO’s website: www.hdyo.org We would also love feedbby just1moreperson - Huntington's Disease Support Center
Thank you Paula, hope you and the family are well. Thanks for highlighting HDYO! For those that are interested HDYO is a non-profit organisation set up to provide and improve the support young people impacted by HD receive around the world. The site will launch in January (fingers crossed) and will provide educational information about HD specifically for young people. There will also be adviceby just1moreperson - Huntington's Disease Support Center
Very good and interesting news for us all. Matt.by just1moreperson - Huntington's Disease Support Center
Nice post Stacyby just1moreperson - Huntington's Disease Support Center
Fantastic news, what a relief for you all.by just1moreperson - Huntington's Disease Support Center
Dusty, there's no need for comments like that. Some understanding is needed on both sides to each other's views and opinions. If I was in this woman's shoes, I'd be angry too. You have to understand that Dusty.by just1moreperson - Huntington's Disease Support Center
My granddad kept HD hidden too, it was quite common a few decades ago to do this. Still is even now unfortunately. My granddad passed away a few years back, and although I firmly disagree with his decision to keep HD hidden, I completely understand why he did it. For that reason I love him. Despite testing positive myself. Has she apologised for not telling you? A family war is not ideal for aby just1moreperson - Huntington's Disease Support Center
Yes, Eve is correct, nothing is certain with HD unfortunately. Again, more to think about when making your decision. Nothing is ever easy with HD either it seems. Matt.by just1moreperson - Huntington's Disease Support Center
Actually Barb, I know of a couple who did exactly this. They went through prenatal I think it was, and when they found the baby had a CAG repeat in the 40's they decided to keep it, knowing that the baby would have a few good decades at the very least. It is very hard not to feel sympathy for you both. You are aware of the risk of JHD being passed on from the father and you want to make sureby just1moreperson - Huntington's Disease Support Center
Getting tested won't necessarily tell you whether those muscle spasms you think you're having have anything to do with HD. Getting tested will tell you whether you have the expanded gene or not. You could go to a neurologist and ask them to check for symptoms?by just1moreperson - Huntington's Disease Support Center
Hi Sunflower, It is difficult to know when to bring HD up with your children, especially when you aren't symptomatic/haven't been diagnosed yet. I feel that makes it harder to explain necessarily why you are bringing up HD in the first place. But despite this, I would talk to the kids now. Get them all together, highlight what HD is in a simple manner, let them know that is what nan has, explaby just1moreperson - Huntington's Disease Support Center
Hi Liz, Difficult position to be in. My father had a feeding tube. It kept him going for a few more years, but his quality of life was poor. Poor enough to make you question whether it was worth doing. Not sure what stage your mom is at exactly, sounds like she is still fairly capable but struggling with the eating. Have you asked your mom what she thinks to a feeding tube? How are you, youby just1moreperson - Huntington's Disease Support Center
Here is a great review by HDBuzz on the HD World Congress held last month. Matt.by just1moreperson - Huntington's Disease Support Center
My dad had a stairlift, we got great use out of it for 4 years, it allowed us to keep dad at home for the end stages of his progression. The OT could not authorise such a thing though, health and safety rules would never allow it. But we felt it would suit our specific situation, my dad's movements had got to the point where they had slowed right down so they weren't an issue, and the alternativeby just1moreperson - Huntington's Disease Support Center
Welcome Edyta, I agree with Noni on the fact that finding out you're at risk for HD out of the blue can be an incredibly difficult thing to deal with. Going onto google tends not to help either, sometimes it does the opposite and scares you senseless. I'm 23, and tested positive when I was 19, so if you would like to talk feel absolutely free to message me on here. Take care, Matt.by just1moreperson - Huntington's Disease Support Center
Very sorry and saddened to hear of your loss Steve & Marsha, thoughts are with you at this time. Take care, Matt.by just1moreperson - Huntington's Disease Support Center