Welcome to the HDYO forum!
As this is the introductory section I figured I'd start things off. I'm Matt, 23, from England, and my father had Huntington's disease.
If you would like to share your own story and introduce yourself to the forum you can do so here. We would be thrilled to hear from you!
Hey, Im Kerri and im 22 - my Nan (Mums - mum) had Huntingtons disease and currently nobody else has had the tests. There are my two uncles and my mum who may have Huntingtons, nobody yet is showing any signs. Fingers crossed they are all OK. There is me, my sister and two beautiful cousins who would be at risk if out parents have HD and further along the line my Nephew. Really nice to have such a great community for support! xx
Hey Everyone! I am so glad that this site is up and running! I am Chelsie. I am 20 and I am from Ontario, Canada. The huntingtons comes from my dad's side of the family. My grandmother (passed), my aunt (passed) and my dad all have it. I have gone through the testing when I was 18 and came out positive and my 2 siblings came out negative. But enough about me! I am excited to meet you all!
Hey there, boy am I excited for this site... my name's Sadie, I'm 14 and a freshman in high school. My mom tested positive for the HD gene November 2011. My granddad is 64 (when I get older, losing my hair...) and has HD. I have one older brother (17) and one younger (8, he has CAPD). All of us are at risk. That's all of my genetic background, but there's a lot more to me, I promise
Hey everyone, glad to see the site has launched!
I'm Noni, I'm 22 and at-risk. I found out last...August or September that my biological mother was diagnosed with HD at 40. I'm not really in contact with her anymore, but I'm close with my biological father and one of her friends contacted him with the news.
She has 3 other children at-risk, but I've never really met them. I don't think they know they have an older sister.
I'm hoping to test soon. Not knowing is kind of agonizing... o_o It's like I'm in limbo and don't know where my life is headed.
Nice to meet you all!
My name is Michelle and i'm living in the UK. I recently learnt that my ex partner, father of my 2 oldest 10 and 8 yrs has been diagnosed with HD. My children have no contact with him and haven't since we split 8 years ago. I had never heard of it before now as my ex was brought up by his father and step mother,its his biological mother we are guessing its been passed down from. My children are unaware of this at present but do intend on telling them very soon just trying to learn about it myself first :) so its a little different for me as we have nothing to see first hand and how it progresses, thankfully for sites like this the help and support is out there for us and I'm sure going to take advantage of this.I look forward to meeting lots more wonderful people.
My name is BJ and I'm from Minnesota (USA). I'm 25, but most days I feel like I'm 10. My Mom passed away from HD last year and although it was hard, I am happy she is in a better place. I look to getting involved in HD activities (fundraising, conferences, reserach) as a way to cope with HD and encourage others to do the same. I'm ooking forward to meeting many new faces through HDYO!
hi everyone my name is kylie and im 33 and from victoria australia, i am at risk and have chosen not to be tested i have a 3yo son. I have a mother with HD in the advanced atages and been in care for 6yrs now she is 49yo. i am seeing hd happen for the 1st time to as we dont talk to other family members and i was to young when my pop had it also he died b4 the simptoms got to bad. But i look forward to chatting to u all
Matty - We are excited as it's been a long but amazing achievement to finally have this amazing meeting place to chat to people in the same situations!
Anyway - I'm Laura, From the UK, South London. My mum is in the final stages of HD, I have an untested brother and I tested negative. Can I just add, BJ, I love that you said.."although it was hard, I am happy she is in a better place." - It's hard to accept but personally, I know my mother is in the worst possible stage of HD as has it very bad (Matty, do you remember her from your visit?...) So I'm feeling a little less guilty about when that "Better place" finally comes.
My Mum went into a nursing home when I was 4, as she had fairly early onset, she was 27 when she needed full time care and lost the ability to walk longer than 30 meters.
I tested when I was 17 with the consent of my father, went through 7 months pre testing counselling and got my negative result on the 7th December 09.
My brother remains untested and is still convinced he does not want to know.
Lovely to meet you all, look forward to chatting some more!
Laura :) x
My Name is Theresa and I am from Ontario Canada. My History with HD is my grandmother; great aunt and aunt have all tested positive for HD. My father has a 50% chance of having HD and refuses to get tested and since I don’t talk to him and can’t see if he has any symptoms. I am currently taking things into my own hands. I am thinking about having children in the next couple of years and would like to know if I HD. I have been referred to a genetics clinic and waiting for my appt. I will keep you all posted!
Hi folks my names Suzie, 23 and am from Scotland. Firstly I think it's great that website has been set up, having a support network is great so people can share their stories. My Gran had HD passed in 2000, My dad is in the middle stages of it, I decided to get tested for it in 06 when I was pregnant with my 1st child and tested positive, I was 18. It's been a hard struggle coming to terms with it but trying to move on and enjoy life as much as I can. I didn't have a very good childhood being brought up with my dad, a lot of violence and still very anxious round him. Hope to meet new people in same situation xxxx
Theresa - I look forward to hearing more about your testing journey and I noticed you've already used the testing area of the forum - well done. Welcome!
Laura - thank you for introducing yourself, I of course remember visiting your mum in her care home. That can be a difficult stage to handle, and I'm glad you have taken something from BJ's experience - that is what this forum is all about!
I'm Marianna from Poland (this beautiful country with delicious food, feel invited!:). I'm 23 (I was born on Halloween so that's the reason behind my avatar:), I'm studying pharmacy.
My Dad has suffered from HD for around 12 years, my grandparents weren't symptomatic though. Me and my sister, my only sibling, are tested negative. Yes, we're so lucky. Anyway I believe that together we can do even more, even if you're tested positive - we are all here to support each other. Even though I'm tested negative - it's not easy to be my Dad's carer.
I'm involved in HD activities in Poland, I'm a leader of my regional support group too. I'm trying my best to raise HD awareness all around me.
How good it is to be with you all here :)
hi im hannah, im 29 and from essex..my mum got diagnosed with HD last year, although has been showing symptoms for much longer, but we didn't know the illness was in the family, so it's all quite new to us. I have one brother who is two years older than me, neither of us want to do the test, unless there becomes a miracle cure i dont see the point in finding out.
Im currently looking into doing PGD to have children, has anyone else on here tried it? It's nice to have a new site to chat to people on, i'm a bit addicted to reading HDBuzz!x
My name is Maria, i am 21 years old and i live in Michigan USA. When i was around 12, my father left my mother because for years she had been going down hill. About a year later, we learnt that she, and my grandfather, had HD. For years i watched my mother go from being my favorite person in the world to someone i felt like i didnt know anymore. She has been in several homes since, and has finally been put in one that seems to work for her. I dont talk about my feelings about my mom and this disease very often because it is extremely hard for me. Im still learning how to cope. So this sight is like a blessing for me, a way for me to learn more about what my mother has gone through and what i may someday have to go through as well, and a way to hear from other people who have also had HD change their lives.