Huntington's Disease by Sue Wright

[saigondaisy]

Thank sue . Great video . Its a little upseting as i get the rusults from my test on monday . I hope and pray thats it good news . If its not i have good family and friends round me to keep me safe and well looked after

[suetwin2]

@saigondaisy Thank you for watching and commenting. I hope and pray you'll get good news on Monday but, if you don't, remember you've also got an online extended family who understand and will do all they can to support you. Love & hugs xoxox

[1204katie]

@suetwin2

I hope you get on ok, I got mine a few years ago now, not good news but my theory is i aint got it today, it works for me xx

[wilsonhighlander]

watch the first documentary about huntington disease in portuguese made in brazil, we're looking for channels to show it.

see on my profille, the " convivendo com a doença de huntington" video

[swhitt21]

In addition to funding research for a cure, the government and insurance companies should provide free In-Vitro Fertilization (IVF) with Pre-Genetic Diagnosis (PGD) testing to exclude embryos with the HD gene to anyone at-risk for HD who wants it. Even those who don't want to know if they have HD can have kids that will never get the disease or be able to pass on the gene. HD could be eradicated in one generation, saving the government billions in future long term healthcare for HD patients.

[TheBadbowman]

Lewisam37 I'm sorry man!! I swear i hope every1 in the world with HD gets cured. Again I'm sorry man!!!

[reyrey301]

angie will be missed

[BeanDentist]

thank u for this video

[LewisAM37]

Huntingdon's Disease sucks, my dad has it and he is nothing like he used to be, it's a shame i didn't know him that well before because i was too young

[shannonblogs]

This is all so new to me. My dad was just diagnosed, but has had symptoms for years. We just didn't know! I'm almost 49 and have had no signs of any symptoms, but I should probably get tested anyway for my children and grandchildren's sake.

[LoveStar127]

My friends Best friend eva has it and later everything that horrible HD has it will happen to her!And my friend only has me and the friend who has HD!she only have us!but she won't know what to do!

[Margaret5313]

my friend has it and shes my only friend :(

[NeverShoutAshley2011]

They have given me permission to get tested as long as i have a reason and parental consent and my mom gave me permission to get tested, Its my choice so she let me make my own decison, im very sorry about your husband, its so hard, i miss my dad with everything. my brother doesnt want to know if he has the disease but i cant have kids if i do,,,they dont need the disease.

[suetwin2]

Thank you - it is hard :o( It sounds like you have a very wise head on relatively young shoulders :o) My husband and I opted not to have children but since the discovery of the gene, there are options such as PGD to allow people to have HD free babies. I know there's more than just their HD status to consider as HD is a hard road to travel for everyone. Look me up on Facebook if you'd like as there's good support there and I could introduce to others who've tested. xxx

[NeverShoutAshley2011]

Could you search me i couldnt find you.

just search

Ashley Egan and youll find me im holding my fathers flag in my profile picture

[suetwin2]

Found you (I hope) and sent friend request! :o) xxx

[NeverShoutAshley2011]

thanks so much(:

cant wait to meet the other people that also had the testing.

[silk14u]

@NeverShoutAshley2011 Dont give up on having children, My first born is an IVF/PGD baby and she is close to 3 years old. The only thing you can loose is money but the gain is amazing! Its Possible!

[NeverShoutAshley2011]

my dad just died of huntingtons diease december 14 2009. Im 16 and im getting tested as soon as we find out where i can, i plan on spreading awareness in my town. June 6th is Huntingtons awareness day. please spread knowledge about this disease and let people know that these people are humans and they are suffering with a cruel disease. RIP daddy thanks for the info!

[suetwin2]

You're welcome! I'm sorry to hear of the loss of your dad so recently - it must have made the festive season hard for you & your family. Hugs to all.

Usually the protocol is that individuals can't get tested until 18 so you may have to wait. I'd strongly recommend counselling as it is a massive decision to test & you need to be certain.

Good luck with your mission and condolences to you and your family xxx

[TanyaTheStrange1]

My mother cared for her mother and now cares for my aunt; both with Huntingtons. My mother is 52 and shows no signs of the disease. But even so her life has been affected majorly by this deteriating disease. She had to watch the people she loves, deteriate infront of her.I still have a 25% chance of having it, which is high considering how similar I am to my mother. I can only hope that in 20 years ahead there will be a cure awaiting. I will do my best to raise awareness for this generation.

[Taken5791]

My closest cousin has this disease and unfortuately she has juvinile HD which means its effected her alot earlier then normal. She has only just turned 21 and is becoming worse everyday. Its heartbreaking to see a loved one slowly die. Im 18 and doing my HSC but i spend most of my free time cooking and cleaning for her it hurts because ive grown up with her and made plans in life which we will now never be able to do.

[TheQueenRat]

im so scared most of my aunts and uncles have it my grandma died of it and we dont know if my dad has it or if my sister or i have it im scared i hope we dont my dad hasn't showed symptoms though and he's 48 almost 49

[Taken5791]

Thats a really good sign. If he hasnt shown symptoms and is almost 49. Thats really good.

[Lillyg22]

omg!!!!!!i'm 13 and have never heard about this y didn't any one tell me?!?!? its so sad your just born with it and die omg!!!i'm going to cry,i'm really sorry about your husband to

[qlobap]

We're all born and we will all die.

The disease is terrible tho my grandma was lucky not to have it but 5 of her 11 brothers and sisters died.

Since it's a dominant gen it's safe to safe I won't get it.

Terrible and overlooked disease!

[jrock11286]

my mother died last year 7/12/08 from this disease. I miss her dearly. since age 14 when she stoped working i started working to take care of her and the bills i finished school while taking care of her my lil brother and working. I don't regret any of it. knowing that i can find out if i have it early is not a option for me. RIP MOM I MISS U AND LOVE U.

[Hoops355]

ive got this shit whole of a disease

[bill8251]

hi sue lovely vid well id gladly do what i can to help sinces its dads birthday in a few months btw thanks for the info sue it helps me alot :) xxxxx chloe

[Rawrsaidthecat]

Im 14 years old, my mum died from huntington's last year. It is the most awful disease, and i respect everyone who helps to try and raise a cure, i hope that i can do the same some day, so that no one has to go through what we went through.

[chadinterrupted]

this disease has taken the lives of my grandfather and his daughter my aunt. it is the most horrific thing i have ever seen. my mom doesn't have it, but i am curious. can i get it if my mom didn't get it? i almost want to make it my life's work to find a cure.

[1993rain]

God bless you

[reyrey301]

R.I.P Angie Hendrix

i know her son

[slifergold]

hmmm.....but what computer folding has to do with this disease????? if u dont know what i mean go to search for atlasfolder in youtube and check out his profile...

[suetwin2]

From Folding @ Home:

Proteins are biology's workhorses -- its "nanomachines." Before proteins can carry out these important functions, they assemble themselves or fold. The process of protein folding, while critical & fundamental to virtually all of biology, in many ways remains a mystery. When proteins do not fold correctly i.e. "misfold", there can be serious consequences, including diseases  such as Huntington's

[76Tammy76]

Oh Sue... I love you!!! For who you are and for all the work you do!!!

[Interactionz]

Sorry for your lost. I learned alot from this video, thanks for making it! :D

[cagg40]

thank you for this post Sue, I will keep it to faorite to show it to aome friends.

[qsefthuko11]

Thiss I s a verrry caring veido you have helped me very much because i have to do a project on this and ur infomation help me! and its a very sad depressing disease. thank yoou Kayla :) and i am very sorry about your husban. i cant wait till i get older i will help find the cure for it if it hasnt been found.

[suetwin2]

Thanks for your kind wirds, Kayla - I'm glad my video helped you. Wishing you all the best for your future.

[latasharp]

Thanks for the video. May God bless all of those who are affected by this disease, may he strengthen you and comfort you in your time of need. I pray that there may one day be a cure and that many lives will be saved. My love and blessings to you all!

[BeautyR9]

i'm a student doing a report about HD and was wondering where you got the pictures of the brains. please respond as soon as possible.

thanks

[suetwin2]

I can't remember my original source, I'm afraid, but the image is available in an article "Huntington's Disease: A Rare Genetic Neurodegenerative Condition" on the Associated Content web site. A Google image serach of Huntington's Disease will also yield other results, I'm sure. I'm moving house tomorrow and will be offline for a few days so I hope that helps. :o)

[NevRav]

Great video :) Yeah, my mom says that sometimes it can skip a generation too. Its rare to skip any more then one, but you can have the gene, but only be a carrier and not show any symptoms. I was adopted, and it was closed. I haven't been to a doctor in years too, so when I do go, I am gonna asked to get tested.

[suetwin2]

Hmmm... I replied and it disappeared. Please see the article I just posted on my Facebook profile: "CAG Counts: Intermediate alleles" for an explanation.

[suetwin2]

Ooops... I posted it on your profile - LOL! Makes it easier to find anyway! :o)

[chipfionna]

the picture @ 2:50 i was wondering if you could tell me where you got it because im doing a project for science on HD and that picture would be so helpfull!

[suetwin2]

I'm afraid I can't recall where I got the image and I'm due to move house a week today and have bronchitis, I have no time to research it for you - sorry. I suggest you do a Google image search for "Preimplantation Genetic Diagnosis" as that should yield 1,000s of images. I hope you'll find an appropriate picture.

[kevinred9]

It's very sad that a lot of people has HD and thanks for the information, it helped me on my project alot.

[dtermineddenise]

That was beautiful and sad. You really gave me some insight on this disease. I am a nursing student and we are currently studying neuromuscular diseases and I was have a pretty hard time distinguishing between the so many different, but similiar disorders. Thank you, you've helped me to see that HD is not so similiar at all. You brought tears to my eyes.  Denise

[suetwin2]

Hi Denise! I'm very pleased to have been of assistance in helping you distinguish between the varied neuromuscular diseases. Huntington's has been described as the worst disease known to mankind and it has certainly produced rivers of tears and numerous broken hearts. :o(

[curlii89]

Hello my name is Cathrine, and I`m 19 years old. I`m from Norway!

I just saw your video, it was very sad!

My mom has HD, it`s awful! and it`s hard to believe that I have 50% chance to get it myself:/

I feel so sorry of all the people that have HD!

[RafidHoda]

Thank a lot! I had an assignment on Huntington's and this helped a lot.

[fifbexxlovee]

im 14 and my dad has had this disease and all of its symptoms since i was born. my grandpa had it too, but he passed away before i was born. my uncle also has it. i want to know if i carry the gene or not. i heard you have to be at least 18 in order to get tested. is that true? if not, can someone tell me a hospital or someplace where i can get tested?

[pristinesmut]

yes you cannot get tested till you are 18 sadly, i'm not sure why this is. Go to any hospital or GP to enquire about it, and i suggest the sooner the better. some people decide not to get tested so they can enjoy their life to the fullest should they develop symptoms later on, however if recognized earlier it gives more time for preparation, research to know as much as possible. It is personal and both are respected. My best wishes to you when you can get your test if you do choose to x

[rumncoke67]

Hi there all. I watched my Partners Mum Die from huntingtons. At this point I am sure my partner has it, showing the symptoms that scare me. My heart goes out to you all.

[cestrum7865]

Love and best wishes xxx

[wadupchrissy]

My Grandmother passed away from HD. My aunt & uncle are both suffering from it. My mom was just informed she carries the gene but she is intermediate at 30. If I understand correctly she will not get any symptoms of the disease but can pass it down to her kids. They said if I get the gene it will be intermediate as well but that it can change if I have a boy and pass the gene to him & he has kids. Does anyone know more about this?

[suetwin2]

I've tried to post a link that should help you but seem unable to do so, sorry. I'll try and contact you another way!

[cheger93]

Anyone who will listen,

My name is Katie, and I am 14 years old. My mom has had Huntington's disease for 2 years now, so she is still in the early stages. It pains me every day to watch her try to walk without tripping, talk without forgetting what she's saying, or even forget she's listening to me. It is so hard to live with, and my 11 year old sister and I are so scared. My grandfather and uncle also have this condition. Please help us. Donate to the HDSA. Every cent counts. Thank you

[dihfisdds]

Hello Katie my name is Melanie and I am 34 I have HD like your Mum and her symptoms are the same as mine. I have 2 sons james is 11 and Harry is 4. James helps me a lot and we know exactly what you are going through. Please get in touch with us if you feel you need to talk to someone, don't be scared you are not alone. We are from England.

[just1moreperson]

hiya sue great video. Was so sad seeing all the kids at the end who have lost their lives. I will do my best to raise awareness and money for HD.

[sabraelluver]

Omg that is so sad... especially the part at the end where u list the ppl who have already died... great job, amazing video!

[sunshinegold1]

Im sorry for your lost

[nreffuns]

u tube sucks is there anywhere else i can view this without being on utube it keeps cutting out

[cielsky13]

i didn't know it was this deadly..thanks for the info..and may the souls of these infected people rest in peace.

[detachedlegs2]

My dad has it, my grandma died of it.

[SumthinMstBAvailable]

Thank you for this video.

[BrieFcon]

I am so sorry 'cause of your husband's and loses of other people that you knew,

I hope too that cure will soon be found and that this will be the last generation born with this mutated gene

[lilmissfrogg09]

i have HD, and i want to thank you for making this video, i learned a lot from, i have some of the sympotoms, but its not bad yet, im 14, taking one day at a time, thank you for all of your support to find a cure

[konfolut]

No treatment and no cure... yet. I am molecular biology student, i know what i say. Within years we will defeat cancer and all genetic diseases. It is just sad that those people didnt have chance.

[bluejeanss]

i really hope that you guys will find the cure of that disease most terrible desease kills u slowly i hve seen ppl crying and their relitives cant do anything abt it just watch them dying slowly pls do something

[shai8057]

Thank you so much for this video... its very sad, i had no idea how terrible it was. :(

[momskippers]

Could you somehow forward this to Oprah. I have been trying to get on her show to raise awareness and $ for HD research. I lost my dad, my brother and sister have HD and 2 nieces tested positive.

[brettwiley1984]

my grannie just died of HD..good thing the disease stopped with her and wont carry on.

[usaswim323]

Wow, this was so touching. It was amazing.

[MultiModality]

My mother-in-law has HD and my wife is setting the stage for her to move in with us. I figured I better learn about the disease. It was a real eye opener.

I thought I would post a link to my research for anyone that wants to read more about it. It's free, or course.

helium dot com/tm/554418/huntingtons-dise­ase-known-huntington

REMOVE THE WORD "DOT" AND REPLACE WITH A PERIOD TO GET TO THE ARTICLE

[upnadam2create]

Hey man, I am doing research for school and saw you here. I recognized your name from your watching my stuff. Wow, what a disease. Science definitely has a place. Sometimes I wish it were farther along for my mental struggles just staying focused and thinking fast enough and then I see a video like that. Hoping we are in the dark ages and things get better.

[FightHD]

Thank you, I am 17 and my Dad died of HD when I was 12. I am in the process of making a site to let children like me talk with one another and find support, because even 5 years later i still mourn my Dad. It has given me a purpose in life though, I have dedicated my life to finding a cure for HD, in my Dad's memory.

[aceabyss]

i sat here and cried so hard when i watched this. please everyone, learn about this and support the HD foundation. i live with HD every day. I married my husband when i was 19 and we had 2 beautiful children. Later, we buried 5 family members who died from HD, including my father in law. I am now taking care of my ex husband, (we are divorced now) he is dying from HD. my children also have HD and my sister in law. Somedays i just want to die. it is so hard watching i just want to die

[Lahmy88]

great informative vid, sue

i dont mean to 'poach' but while we're all on our computers here looking at this, we could actually be helping research at the same time... to find out how please GOOGLE search Folding@Home (i could not post website due to comment restrictions sorry)

[suetwin2]

Hi Ashley! I'm glad you found the video informative. I don't mind you "poaching" as I have been folding as much as I can! If others want to join in, please consider joining my team. The link is at the bottom of my domain page at the beginning of the video. Everyone welcome!

[mikitheone74]

hello , my name is mihaela , i'm from romania . My husband is ill from HD about 5 yers ago . i would like to know more about your problems with HD . they don't send the comment on the site if has an mail adress , but i tel you the it's start with : MIKITHEONE74

[TybudX]

I'm so scared, I don't know what to do. I've given every penny I have to research, and I keep giving it every month. I just hope somebody else can benefit from what I've gone through, and what my mom went through, and her family. God, I just don't want any of this to be a waste. I wish I could do enough to help everybody else.

[suetwin2]

I am so sorry you are feeling so scared and that your family has suffered the impact of HD. The research is looking very promising and I truly believe that this will be the last generation to suffer the full impact of HD. Please don't hesitate to contact me for support via the web address at the beginning of the video.

[mikitheone74]

Thanks for your answer . I'm waiting for the good news !!! :)

[mikitheone74]

i'm from romania . i try enter on your site and i don't find anything useful for me . your site it's verry complicated . anyway i want to say that my husband (39 years old ) it's ill from HD and i like some help in enyway from your organization ... especially news and psihological suport . my mail addres is : THANKS... and i apologise for my bad english .

[suetwin2]

I am so sorry that your husband has HD. Your email address hasn't been posted here so I'll find another way to contact you. Don't apologise for your English! I understood it perfectly.

[time4sleeping]

Thanks for including Kieran, this shows that HD doesn't discriminate, no matter how old you are.

[suetwin2]

(((((Dee))))) I'm so glad you didn't mind me including Kieran as I didn't have your specific permission for this purpose. I wanted to get the video out during our Awareness Week as so few are aware of jHD, let alone that it claims children so young. I have you and your family in my thoughts and prayers every day still despite out limited direct contacts these days. God bless.

[suetwin2]

Not awake yet - "our" limited contacts.

[crallow]

i have started a cause on "facebook" to promote awareness of HD. just type in huntington's disease in the "search" box on facebook.

[suetwin2]

Thanks for the information.... I'm now lost in Facebook world - LOL! Keep up the good work.

[bigmattw1975]

My Mum died of HD last year aged 58,My Grandad died of HD in 1992 aged 66.Everybody needs to be aware of this Disease.

[suetwin2]

Sorry to hear that you've lost your mum and grandfather to HD. If you ever want to talk about it, please don't hesitate to contact me or join one of the chats we have at the support club I run.

[leetwin1]

Both informative and moving.  This disease is a vile killer.