As a doctor when I studied about this disease I was shell shocked. We are made to study diseases like they are an everyday phenomenon and most of the time we do that without any second thought. Then u come across autosomal dominant diseases like huntington's and you have to contemplate. And when you actually see a patient u are terrified.... Atleast I was. But then I saw videos on RU-vid and saw how the patients, no people.. are living life and don't give a shit about their disability, I was so so happy. No matter how much you do as as doctor, you can't do what the human will to live can.. and for that I am thankful...
+Soumyadeep Bag Your comment touched, moved and inspired me. I'm sure that you are an awesome physician! No doubt you "get it"! These people are inspiring!!! HD Care Giver
Robert Steffan Thank you so much for saying this. I actually believe most doctors try to do best by their patients. I try and give my best and will hopefully be always able to do so.
That's really cool, I'm 12 my dad has it about 9 years in, and he can't really do anything now what upsets me is barley anyone knows what it is.... I drew the purple ribbon and I was told by an adult I made it up.... it was really sad...
As an ED/Trauma nurse (retired) I came across Huntington's patients as a result of inhalation pneumonia or an allergic reaction to medication or some other complication from an exacerbation of the disease...I just can't imagine the difficulty these young ladies find themselves in...the fact is that at least 2, if not 3 of these girls have the disease and die prematurely from it....how you could live life with that burden...🤷♂️ takes a stronger person than i... hopefully there will be a cure before they develop symptoms....
My mother passed away at age 55. She suffered for many years from Huntington's disease. Her mother her uncle and her two aunts all had Huntington's disease. The day of my moms funeral I found out I was pregnant. I didn't know weather or not I had the gene but I just couldn't terminate my pregnancy. When my son was 4 months old his father and I broke up. I was alone and very scared. Anytime I would forget something or I would get a twitch I would think here we go, this is the beggining of the end. I wasn't really living life. It took me until my son was six to get tested. I got the blood test done and decided to take my son to Disney world, just the two of us before I got the results. The day I got my test results was the scariest day of my life. I went with my very best friend for support. I got great news. The gene did not pass on to me and my son will not have to suffer either. Thank God. I do have two brothers. They have not gotten tested but one of them is in the middle stages. The other doesn't seem to be affected. The sad part is my poor Dad watched his wife waste away and now he's taking care of my brother.
Awwwwww I'm so sorry!!! Me and my brother and my mom have a close-knit bond and I can't imagine anything like that happening to my family. You're a very brave person but I am glad you tested negative and don't have that Gene but I am sorry about your brother
My wife's got Huntington disease. She is in the photo with my two children. Everyday I see her getting worse. I would not wish it on my worst enemy. My wife was such a vibrant woman and now she is slowly withering away and I am helpless to stop it.
I am watching this video because I am making a presentation for my science class on HD. I feel terribly sorry for everybody who's impacted by this terrible disease. I will help spread awareness as good as possible. These girls are so brave, I really admire their strength. To everybody who's being impacted, you're not alone, stay strong.
I'm 28 and this is my life!!! I've watched my mother and her siblings with HD go down hill and pass so quickly. My mom is 54 and as of Thanksgiving 2014 she's the last one left. She's in the last stages of her life. All she has is me and the nursing home staff, its all too much. Till now I haven't wanted to get tested but in January I will be. I have just 2 twin cousin's and they both tested positive there 26 and showing lots of signs. They both have 1 child. The girl just had her baby it wasn't a planed pregnancy, so she kept it. Her brother's girl friend got off the pill and didn't tell him and now he has a baby. So that just continued the gene in my family. I haven't had any children and if I test positive I will not even though I want to so bad! I will not do the IVF I will not let my child watch me go down like as a single child I've watched my mom. I support all you girls on this video and thank you for spreading awareness, it starts one family at a time! Please get tested and don't pass this gene, Stop HD! RIP Merrill family
Kristine, I just read your post. It is February of 2015 and so I suppose you have now been tested? I hope and pray that your test came back negative. My son has HD and also has four children, that he had before he knew this ran in his family. Thank God that there is now a test. God bless you.
Kristine Spangler I Know Where Ur coming from hun ...i Lost My Dad and 3 sisters at young ages and still gone loose 2 Brothers and i never got tested for it ...I Live one day at a Time... Im 47 years old and have 2 Beautiful Growing up kids and 3 Beautiful Grandkids and I always wanted to be a Nurse when i was younger to take care of my daddy and didnt make that Far ...But im a PSW today that the closest Nurse i could be ....HD is not nice to see ur Family dying from ....But my kids and My Grand Kids Made me strong :) and the Picture U see is my 1st Lovely sister that pass away in 1998 at the age of 32 she was a year and half older then me she was my best friend .
sbrooks11 I am sorry to inform you that I never got tested. My mother took a turn for the worse and I couldn't deal with all of that, so I just concentrated on her. She passed away 3\10\15 a week before her birthday. I was right there with her as she took her last breath. I still want to get tested but I'm just scared. I'm on Facebook and there's a lot of support groups if you would like to join them as well. I'm so sorry that your son tested positive! I really hate HD!
A big thank you to these brave, beautiful, young women for sharing some of their thoughts and feelings about living with Huntington's disease in their family. #huntingtonsdisease
Bravo ladies! Sharing your stories is the best way that we can have hope and help for a cure in our generation. I care for my husband at home while our 2 children watch him slip away. I am not sure which would be worse for them. You are all an inspiration to me!
My dad passed away from HD earlier this year and it was extremely difficult to watch the progression of this horrible disease. On the other hand, our family learned what quality time multiplied by the nth degree meant. He fought to the very end and I'm so lucky to have had that time with him... I miss you, dad... RIP
Thank you, Cara. I'm sorry you're having to deal with it as well. ***hugs*** I'm definitely not ready to know... not sure I want to tbh. All the best and love for you and your family as well...
Your honest sharing is important! My dad and one brother died of HD. One brother out of five of us kids. I’ve lived your story. Every day I am thankful for the opportunity to live what is best. Life is a gift, live each day as if it was your last and it will be worth the effort.
I'm 28 and went thru this with my mom she got sick when I was 11 and she passed when I was 22 its a horrible disease now my oldest brother is showing symptoms of it... it really fucks u up seeing family go thru this
These girls may not want to know if they have Huntington's Disease, but if they want children, it is IMPORTANT they know for their children, may inherently receive the disease; suffer the consequences of the parents choice to not be tested. Self-denial and fear are not a way to live either. There may not have the genetic mutation and live a better quality of life, but if they do have it, they know what will be better to focus on in this life. They can get the help they need for themselves when the time comes they become more sicker. Having children with these neurological or autoimmune conditions is not recommended. Save the suffering for others..and possibly for yourself!
BB it's not denial dumbass it's the fact of being scared and knowing we might have it.. we know it's a 50% chance we have it we just rather live our life till its our turn..
Villain In.black Do YOU know what a DUMB ASS is? Someone who is too ignorant and does not have a high vocabulary!! Inconsequential beings need not think of oneself, but of the well-being of others! Get a grip on yourself! The existance of oneself changes when a female brings life into this world!
A good friend of mind lost his wife at 42, his son at 20, daughter at 27 to HD, this almost destroyed this man, they had no idea what was happening with his wife until the son was born, it ravaged his family. With all the money & research there should be a way to turn off this gene‼️ it's heart breaking.
They actually have mechanisms to sort out sperm and egg cells so that if someone has Huntington’s disease, they will choose a sperm or egg that is not carrying the Huntington's gene. Because of ethical issues, it might not be available in Canada, but it is in the US. Just thought I'd share this info (I'm learning about it in university). Also, My thoughts and prayers go out to everyone who suffer's from Huntington's disease, as well as friends and Family of the patients. I hope a cure will be found soon.
To Kristen. You will never be alone. There will always be people who are there for you. I know it is hard to go through all of this but in the end, try and be happy about all of the good times you were able to have. If you ever need someone to talk to feel free to email me.
Liam L very nice gesture. My wife has lived with HD in her family all her life even her mother had HD. My wife has started to write a book. She donates her time the the HD society in the U.K. and even though she had her test and it was negative. She still continues to serve people with HD anyway she can. Just to add. My wife is a twin. Her brother has HD. My wife was lucky I guess you could say. But it took her 30 years to make the decision to take the test. Thank you for being kind to others. This world needs more like you Liam L.
My mums friend Roni has HD and I've grown up with her, only 2 years ago she was still quite lively and talkative, she had very obvious ticks but she could still speak, but a small accident took it away from her, she's now bed bound and unable to speak, but she understands everything, and that's heartbreaking, Roni is a lovely woman and she doesn't deserve this, seeing her in that bed broke my heart, she's now considered in the final stages and I'm dreading the day we hear that she's gone, she's such a lovely woman
Jennie Wright Hi Jennie. One of the most heartbreaking facts about HD sufferers is that although they are bed bound after the HD progresses and their movements become less one thing that stays the same is the understanding part of the brain. But are unable to respond like you or I. I am sorry you have this in your family. My wife’s mother had HD my wife is a twin and her brother has HD my wife hasn’t. But my wife would never turn her back on a HD sufferer as long as she lives she spends her time on the HD society website offering her services. Just words of comfort and advice. It took my wife 30 years to make the decision to get tested. It’s one heartbreaker. I hope I’ve given you a little comfort if only by acknowledging your there..keep welll.
Its a really nasty disease on all levels. My Dad has it , me and my sister has it. I think that the people that is hurting most of this disease is the loved ones that stand beside and is watching. We can only hope for a cure in the future :(
Mattias very well spoken and put across. You are right to an extent. But you have to give credit to the person who has to make the decision to have the test. This is not something you can do in an instance. When you live with HD in your family and your the one who’s life this may change is a shattering decision to have to make its like the Matrix. I’m not saying it’s easier for a man than a woman but a woman who grows up with thoughts of having a husband and children etc etc is heartbreaking. Best wishes to you.
I wish all their problems go away they need all the support they can get if I knew them I'd help as much as I can even if it means to marry 1 of them just feel like giving my all to help them pray to God they have the least difficulty of helping the parents live a stress free life love all over u girls om here if u need me xxx
I'm in my last year of medical school and (in the U.S. at least), we are now trained as physicians to not administer genetic testing to offspring of HD patients. There is no cure, no treatment to effectively slow the progression of the disease, and the deterioration and early death are so devastating that it has been deemed unethical to tell them whether they have this gene and therefore will suffer the same ill fate as their parent or not. Apparently, genetic testing for HD was once freely offered to children of HD patients if they so desired to know….but the suicide rates of those who found out they do in fact have the disease were so high and those who didn't kill themselves simply stopped "living", fell into deep depressions, withdrew from loved ones, and stopped doing all activity, essentially becoming recluses just waiting to die (instead of spending their last healthy years out 'living'. So U.S. physicians put an end to HD testing unless a patient is presenting with actual symptoms. Each physician has autonomy to conduct the testing on a case-by-case basis….but in general, physicians are strongly discouraged from doing so because of our oath to "do no harm".
+Sarah Norment - I just want to clarify some of your information is incorrect, maybe outdated I'm not sure. It is unethical to test children for the HD gene and is widely discouraged. Testing for any individual under the age of 18 is only done if you are confirming a diagnosis of juvenile onset HD. Over the age of 18 Adults however can test at their discretion. Most neurologists prefer that pre-symptomatic adults get tested at their nearest Huntington's center of excellence. Where they are evaluated by a neurologist, a genetic counselor, and a psychiatrist. This is done to make sure that people who are going through this extremely emotional decision are as prepared as they can be for the very difficult choice. Studies have also shown that in individuals who have chosen to test do suffer depression upon receiving a positive gene test but that incidences or suicide and suicidal ideation are actually less that individuals who don't test and develop the disease.
+Sarah Norment I agree with that 100%, unfortunately my daughter at the age of 10 was diagnosed, but had she not presented symptoms, I would not, as her parent want to know. I give a tremendous amount of credit to doctors who specialize in this disease to make that decision.
I am a nurse and have taken care of many patients with progressive neurological disorders. I would want the testing before making decisions on having a family as I think your children have a 50/50 chance of becoming symptomatic. It is a dreadful way to die. There are some treatments that slow down the choreaform movements such as Haldol D
I am with you my nan died last month of it and my uncle has it who has 2 kids and one grandson but my other uncle is yet to be tested my mum is clear of it
It's been in my family for a very long time. My great grandma had HD so did my grandma and then when he had my dad and my aunt he passed the HD gene onto my dad but not my aunt. So when my dad had me and my older brother he passed the HD gene onto us. So it's been in our family for a very long time. But my dad had no idea he was sick with this disease when he had me and my older brother.
A top scientists are working round the clock to develop treatment for Huntington's disease which caused by a faulty protein and gene silencing drugs tell brain cells not to make that protein, as a caregiver i know that gene silencing is our best hope for effective treatment
If I were in their situation, I would get tested at 18. If I'm positive, I would do everything I have always wanted to do, tick everything off my bucket list, until I develop symptoms. Then as my symptoms get worse, I would probably jump off a bridge.
+aglining Anybody who chooses to have children face an incredible risk. Your child may be born with any number of issues, genetic or otherwise. No child comes with a guarantee. Even if you were to pass on the Huntington's gene, that child's life may be rich and full and long. I may reach the age of 26 with no signs of any medical issues and then suddenly come down with cancer. It may be painful, draining, and make me a different person before I finally leave this world, but that is not to say that those years were not worth living. It is with this hope that some decide to move on with their decision to marry and have children. Hope spurs them on. 50%. 50% chance that their children will NOT carry the gene. Let's be supportive of their journey and the difficult choices people make.
+Micky Annis I know what you mean when it comes to no gurantee when you have children however I just feel that if you know there is a genetic illness in your family history and that there is a way to find out if you are at risk to pass this along to your child I really think you should do as much as you can before. We have the means to stop this illness by getting tested and if you are HD positive u can test your "fetus" ( I dont know if thats the word )
+aglining It's more complicated than that - I'm a physician, a neurologist, and believe me - I wish it were that simple. My advice is you educate yourself, or, at least be more considerate. Making comments like yours in a forum where sensitive, HD+ people with families visit and post is irresponsible.
+Micky Annis If you parent has Huntington's, it's much more than just "I might get cancer and die". We're talking 50/50 chance of you having it. You NEED to get tested before thinking about having children. If you know you have HD, it's not fair to bring a whole new generation into the world who will watch a parent waste a way and likely suffer with the disease themselves.
+volz519 it's complicated. Do you believe that people who are known HD carriers do not have the right to have children? Eugenics doesn't seem fair either.
my mum has HD and is starting to get to the serious part of the disease. I'm 15 and and not sure if I've inherited the gene.... it's hard to see my mum like this, and hope I won't inherit Huntingtons.
My wife is getting ready to take a test because my wife's mum got it and her pop died from it too sad. So we know its a protein that hitches a ride on a chromozone the question is how do we drop it off at a toilet break then blow up the toilet with it inside hmmmm?
My brother is diagnosed at 67 with symptoms but for me at 63 and no symptoms I have dodged the bullet. Nevertheless I think epigenetics dictate that diagnosis is not a verdict and I think diet can be a solution as Dr. Mary Newport has done neurological treatment of her husband with the degenerative brain disease that is Alzheimers. In her book What if there was a cure, she has shown success by way of diet and long chain fatty acid action in brain metabolism. It need not be a given sentence with no cure.
Hello. anyone, if you have ever taken the genetic test to see if you carry the gene, did it help you in any way knowing whether you were going to develop the disease or not? I am 20 years old and struggling with making a decision whether to take the blood test and wanted some help or personal experience. Thank you.
+Lily - I am currently in the process of trying to get tested. There are resources and support groups available to help you decide if finding out is right for you. Let me know if you need any help finding these resources. As for me I don't have my results yet, I understand how hard this is
+Genevieve Goulding hello genevieve. than you for responding and yes, i would appreciate any resources you know of that are there to help. I wish you the best in the testing process. It is so bittersweet connecting with others that share this disease. Thanks again for responding.
+George Kafantaris - It is a disease which you can get if you have a parent with the Huntington's gene. It causes one of the proteins in the brain to be misinformed. The bad protein builds up and causes brain matter to slowly die. It is different from MS in that you don't have "episodes". MS affects the coating on the nerve, Huntington's affects brain matter.
I belong in Army family & my husband sarve Huntington desases in last 10 years. I live in pakistan. Pakistan mei is desases ky bary mei bilkul bhi knowledge nhi hy, mary husband luckly sarve in Pakistan Army. Or jo doctors hum ko Army mei mily wo bohat he competed hain or mujy first time mary husband ky doctors ny he advice kia ky is desases ky bary mei study kro, or jasy jasy mei ny is desases ky bary mei study kia tu first time tu mary mind ny is ko expect he nhi kia, phir ahista ahista mary mind ny is ko expect kia but abhi bhi mujy kbi kbi bohat dir lgta hy is desases sy. Its a completely personalty disorder desases.
How brave of these girls to be out there talking about their situation. I know, because I too live in the shadows of this hideous disease. I am now in my late 40s and have already lost 3 siblings to Huntington's, and my father when I was 10. I've chosen not to be tested, but it's not a decision I've taken lightly. It has become even more difficult, now that I have 3 children - 2 of which are teenagers. I hope that one day sooner rather than later, a cure is found and people can live their lives without the HD shadow hanging over their lives. My advise to young people at risk of developing HD? Don't let it beat you. Live, love and allow yourself to be loved. I prefer the glass half full attitude...I may NOT develop HD.
My great Aunt had it. And even though I met her only a couple of times it was enough to realize that this horror was something no moral human being would ever inflict upon his/her children. She had the excuse that at her time there was no test available. What is yours?
To be honest Kyniker, I don't think that I need to explain myself to you. If I was to explain, its doubtful that you would have the compassion or love in your heart to even come close to understanding. I'm sorry to hear that your great Aunt was an HD sufferer. I hope that she had the love and support of family and friends close by.
