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Welcome Sarah!
You mentioned that you found out about HD when you were 15, has your mum had HD for longer than that though?
It sounds like you are starting to accept HD and the risk, which is a very positive step and one which usually takes some time to achieve. Well done.
You also mention meeting six young people impacted by HD in your life. How did you find that experience? We are certainly trying our best here at HDYO to 'connect' young people via the website. We'll be making some improvements soon that will hopefully encourage this.
Also, are you a member of the National Youth Alliance (NYA) in the States? That is the American HD Youth Group and they meet each year at the HDSA Convention. People can apply for scholarships to go to the convention and there's usually a lot more than six young people there (more like 60-100). If you want more info about the NYA let me know.
Welcome! :)
Matt
I don't know when my mother was first diagnosed with HD, but it was at least 10 years ago, based on comments she made when I was younger about eventually being in a wheelchair.
The other young people I met were at a conference with our local chapter of HDSA. We had a youth group for a while, but it broke up because we just couldn't find a way to get ourselves together - we were all in high school and scattered across two states.
Hi, its took me a long time to pluck up the courage to write on here as blocking the whole disease thing out seems such a better option at times. However I'm Becci and i am 23. My nan, auntie and dad all died of Huntingtons disease before they reached 40. My dad however decided to take his own life as he did not wish to die the way his mom and sister had. He passed away when i was 15 and the impact it had on my life still affects me till this day. Last year i decided to get tested, it came back positive (which i knew it would.) I am petrified and feel like i don't have enough time to do everthing i want to do in life, I also don't feel i have any support around me despite having plenty of friends no one truly understands. My cousin also was tested positive for the disease, she is 25 and already showing signs, this has made me even more scared!
Most of all i don't want to sit here and just be another statistic, and just let the disease take over, i want to make a difference and help others, i want to do huge fundraisers, i want to put an end to all this hurt and pain this disease causes, but i don't no where to start.
Also, thanks for a great website!
Hi Becci,
Well done for plucking up the courage and posting on the forum, that can be such a difficult and brave step to make at times.
It sounds like you have been through a lot and you mention that your dad taking his life has had a massive impact on you. Would you feel comfortable what kind of impact that has had on your life?
You say that you have no support and although you do have friends, they don't understand. That is quite a common feeling among young people impacted by HD.
It seems despite the fear of HD you are determined to be positive and get involved with fundraising, which is a great attitude. To show such resilience is something to be proud of. Have you thought about what sort of fundraising you would like to do?
Once again, welcome!
Matt
Hi there, my name is Zoe, im 30 yrs old and from Australia. My dad, uncle and gradma have all passed from HD. My older sister and younger brother have both been tested and luckily have come back with a negative result. Testing for HD is something that has been on my mind for the past 15yrs however it is only now that i have decided, or had the guts, to undergo the process and i am currently waiting to find out what the future holds. Like many others i have tried to turn a blind eye to HD however finding websites like this one, having the support and knowing that there are others going through the same thing, has put my mind at ease and has helped me be at peace no matter what the outcome. My heart goes out to all of you and i wish you all the best for whatever the future may hold. :) Z x
Hi Zoe
Welcome to HDYO! It is really nice to hear that sites like this have helped put your mind at ease no matter what the outcome.
You mention that you are going through the testing process, how is that going for you? Each individual has a 50/50 chance, remember that.
So pleased you've found the site!
Matt
In reply to zoweeHi Becci,
Welcome! Sorry to hear about your story, but congratulations on wanting to make a difference! If you haven't had a chance, check out http://en.hdyo.org/you/fundraising/103 which shares a few stories from other young people who have decided to take the same stance against HD....maybe it will provide you with some ideas of something you would like to do :)
In reply to BecciHi I'm Paula! I'm 22 and I"m at-risk for HD. My grandpa died from it when I was in high school and then my aunt died a year later, she was only in her 40s. I miss them a lot. Plus, my dad has it, too. He's had it since I was really little. He was always so angry and it scared me when I was growing up. I wish I had some way of knowing what to do back then, but I never had a website like this to help me out, so I really appreciate this site! During high school it just seemed to get worse and worse. He had terrets so he would yell out cuss words every single day and flail his arms and legs. I had to take care of him when I was in high school because my mom worked, so having to juggle homework and my dad was hard. Things got so bad I had to leave home until my mom put him in a nursing home. Now, I'm living at home again and I'm healing from all of this and I got closer to God because of it. Having perspective on all of this now that I'm older has really just given me a huge appreciation of life! I am going for my dreams of becoming a writer. I know I am at-risk for this disease and it holds me back a lot in life, but I have hope that things will be ok. Whatever happens I can get through it. It's nice knowing that I'm not the only one going through this because for a long time I thought I was alone. And I have come to love my dad and forgive him for what happened. I know now that it wasn't his fault and I visit him at the nursing home a little, too. It's been hard not knowing whether or not I have HD. It's been on my mind for awhile now. I am going to take the test soon, I just need to know the truth and move on with my life. I feel like i'm stuck in one place. It's hard to pay for it, too.
Hi Paula,
Thank you for posting on the forum and sharing your story. I am glad that you appreciate the HDYO site, that is certainly good to hear.
It sounds like you have had a difficult time growing up with HD in your life. I'm wondering when you left home because things got too bad, where did you go for that time?
You also mention that you feel bring at risk holds you back, what do you mean by that exactly? It is something young people say quite often.
It is nice that you feel that you have an appreciation for life now and that you love your dad. Forgiving can be a difficult process which can take some time to achieve. It sounds like you have turned things around in your life.
You are not alone here Paula, there are many young people who go through the same emotions and anxieties. If you would like to talk about your feelings around testing there is a testing section on the forum, that too can be a difficult process and support is important throughout.
Good luck on your dreams of becoming a writer. Following dreams is what life is about! :)
Take care,
Matt
Hello My name Is Alex I’m 18 and live in Sydney Australia.
I never knew my grandfather as he passed away from HD before I was born. He fathered 5 children two already diagnosed with HD. My Dad was one of the unfortunate two. Dad was diagnosed when I was only 5 years old. Life for my dad and our family became a constant struggle.
In August of 2009 my Dad was killed in an accident unrelated to HD.
I loved my dad immensely if anything HD made me love him more. I have learned so much from this life experience; so that’s what I am here to share. Hopefully I will learn from others experiences too.
Hi Alex!
Welcome to the HDYO forum, glad you found the site and thank you so much for sharing your story.
It sounds like HD was a part of your life from a young age. But it is great that you seem to have taken a lot from the experience you've had growing up and it is so nice to hear that the love for your dad seems to have grown throughout that time.
Thank you so much for sharing your story. May I ask what you are doing in your life at the moment Alex?
You know, there has been some excellent progress in support for young people in Australia recently. Did you get the chance to or know about the recent youth meeting in Sydney?
Take care,
Matt
Hi Matt,
I currently work full time and pregressing well in my career. I live with my mum at the moment but saving for my own place.
No I didn't know about this what organisation is holding it? Huntingtons association of NSW?
In reply to MattHI Alex
My name is Zoe i am also at risk of HD and live in Sydney. Im currenlty undergoing testing, i had my bloods done last week and am anxiously waiting for the call to find out results. The genetic councellor from the hospital got me in contact with Sally McKay, the lady that holds the HD Youth Alliance Workshops. Unfortunately i was not able to make it due to other commitments however sally sent me through all the notes for the meeting. She is a lovley lady who tested positive a few years ago and has a great outlook on life with 2 gorgeous children. Im sure she would not mind you contacting her for other workshop dates/information. Her email address is sallyausthd@gmail.com. All the best for the future!
Warm Regards
Zoe
Hello Zoe,
That's a huge help I've already sent the email :)
It's good to know their are others in Sydney affected by HD.. Makes it feel real
That's a courageous thing to get tested and I wish you luck!
All the best, Alex
In reply to zoweeHey everyone, my name is Emily and I'm 16. My mum got diagnosed with HD when i was 14. It's been a difficult few years and whilst at the moment there only seems to be physical symptoms, I know i am worried about what is going to happen. As the big sister i have decided i need to be strong and support my younger brother. And because of this I just wanted to say I think this website is such a good idea! I have never met anyone (other than my own family) who's got a parent with HD so it has been helpful to hear about others experiences. So thank you all!
Hi Emily!
I'm glad you found the site and that you think it is such a great idea! We always love to hear what young people think of HDYO as we hope to continue to improve it for you in the future!
It seems that HD is fairly recent for you in your family. I can see you are worried about the uncertainty of the future but I hope that you have/will find the info on this site useful in dealing with those changes and concerns.
You also mention being strong for your little brother, how old is he? Being strong for a sibling is understandable, but always keep in mind that you deserve just as much support as your brother too. :)
Thanks for posting!!
Matt
hey :)
yeah i guess we are fairly new to it all, although my gran had the disease for as long as i can rememeber her and yeah its been nearly 3/4 years since my mum got it.
erm..my brother is 14, so not that much younger but, i think as lots of people probably find that because not many people know about HD there doesn't seem to be too much support, at the moment anyway.
Hi I posted at start of this forum ,sorry I didn't reply guys. Just a wee question, are people allowed to share their emails n become like hd pen pals...? Sounds silly but it would be good to speak to someone you think as a friend. Wish I knew more people in my situation. It's really hard sometimes :-/ xx
