I’m a retired nurse, I’ve never had a patient with HC, but one of my coworkers developed HC. His mom died from it & his sister was in a nursing home, he was terrified to get tested, but the symptoms were very noticeable after a year. He was tested, he worked as long as he could, until he no longer could preform simple procedures like change an iv bag or chart legible. It was very sad. Even though he had only worked 15yrs our nurse manager fought the hospital board for his retirement from the hospital. RIP CS...my friend! ♥️
Hi Megan, Contact Meghan's mom, Cheryl thru the Huntington's Foundation...she could give you all that information from a patient perspective. Dr. Frank, Meghan's doctor, could help from the medical perspective. It is such a cruel disease. Good luck with your studies.
I see this comment is 6 years old. I’m so curious about where you are in your medical education and training, what speciality you choose to go into. Just by your comment I’d guess you are a fabulous doctor
As a nurse this was the cruelest disease I witnessed. Hope 1 day they get a break through for this awful disease. R.I.P to all the ones who’ve passed away from H.C. Love and light to them all. 💙❤️✨✨🕊
I have a very different genetic condition, it isn't fatal, but I'm the age Meghan was in this video and just as homebound. When Meghan was talking about her mom that hit *hard*, my mother and I are exactly the same. I can't imagine what my life would be like without such a special giving person like her in my life. Appreciate your parents ❤️
I have ALS. As nurse, I witnessed 2 sisters with HD in different stages of the disease. Can you imagine watching you family member die, knowing that you have the same prognosis?
@@ChristineGilmore-nk9pz The mother of a friend of mine had HD and my friend developed both HD and MS. She died in 2019 at 49. What she went through was excruciating.
This mom is unfucknbelievable, so strong, so patient, she lost husband, loosing her youngest daughter, and she'll have to do it all over again when her older daughter's HD starts. And she does it with such a positive attitude. People like her are rare breed, i mean to me it would be humanly impossible. I would crawl in some dark place under blanket, and stayed there.
I have symptomatic Huntington's Disease. I love all of the people who help me every day, and I can't imagine doing all of the emotional lifting by myself. It took me a while to understand that being responsible for my diagnosis and treatment was the right path for most of my family and friends. My neurologist told me that if I quit drinking and smoking and self-medicating with cocaine -- I might have a better life. And she was right! She also told me about neurogenesis: a process that makes new, usable brain cells. All human brains make new, usable brain cells when we run and when we take SSRIs.
The first cure according to Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end. This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
This can be tested for now. In past generations families were embarrassed and didn't talk about it and people had kids without understanding the scope of the problem. It's devastating.
😔😔 I can’t imagine how hard for the mother to take care of her husband then her daughter i appreciate you,, I found out about this disease lately by a film so i kept searching about it to understand more then i found this video it really affected me ,, God bless her
to meghan's mother. I am so very sorry for your loss. For the loss of your husband and for the loss of meghan. I hope that you get through this really hard time ok.
I visited my hometown just recently and went to see my childhood friend, who recently developed the HD. She is 37 now and a mother of 4 children the youngest is only 3. My friend inherited the disease from her late mom and one of her brother got it too but he is in more progressive stage. Breaks my heart watching this video!
I am doing my PhD on understanding the disease mechanisms of Huntington’s disease. It breaks my heart into thousand pieces after seeing the severity of the disease and how it effects the patient.
To all families and anyone who has been diagnosed with this horrible and cruel disease. I really am so very sorry for everything that has had to go through this disease. I really do hope that we will have a cure for this horrible disease soon.
@@misfitm1457 Because the diagnostic tests we have now for Huntingtons did not exist in our grandparents generation, many people are not aware that Huntingtons is in their family. And because onset of symptoms is commonly after child bearing age, many people have children before finding out. Its really important not to add to peoples devastating and sad diagnosis by critisizing their personal life decisions without knowing their history.
What an amazing psychologist. She reminds me of my own psychologist. I live with a severe mental illness that has serious physical side effects and at 31 my life is limited. My psychologist is like a second mother, while still remaining 100% professional. I also have an amazing psychiatrist and GP. These people really do take chronically ill young people and nurture them with all their being. I know that when I do pass, it will not have been for lack of the most appropriate treatment. I hope that whatever happens after death, Meghan is at peace, and that her incredible mother is able to keep going and be supported as much as she too needs to be.
A woman in my small hometown had Huntington's, so I was privy to it at a young age. Her two daughters had to watch their mother deteriorate horribly before dying in her 40's. Now they both have to live with the fear of developing it themselves. Please, if Huntington's runs anywhere in your family, don't have children. You *might* have healthy kids, but that doesn't justify potentially sentencing your babies to a lifetime of suffering. Adopt, foster or mentor. Just please don't knowingly pass this awful disease to an innocent being who has no say in the matter.
My mother started showing signs at around the age of 35, She's now 50 and is still functioning well enough to live without full time care, we're lucky. I am 25, I have a LIFETIME of fantastic memories from a mother that loves me beyond anything else in the world. Yes its horrible to see someone you love so much degrade the way she is, but I would not swap her for anyone. So many things can go wrong with the human body, people even die in freak accidents. Being in the military I've known many taken before their time... should their parents never have had them? Huntington's in your family is hard enough to deal with - and I'd wager a fair amount that most who see this video will have it in their family. It is scary enough without such blinkered views being broadcast to them. To those people I say stay strong and good luck. No one would knowingly pass this illness onto their children.
Peace Knitty - Politeness be damned. Some issues are too serious to pussyfoot around. This is one of them. Knowingly reproducing when you have this disease is beyond selfish...it's downright cruel. Does the parent's "right" to have kids supersede the child's right to a healthy, happy life?
This hits close to home. My son's grandma has Huntingtons & we don't know if his dad has it or not. It's 50/50.. I break down at the thought of my precious son potentially having this disease. Nobody deserves this. I've witnessed first hand the struggle of HD. It scares me even more seeing people getting it so young when on average it tends to hit you in your 40's. It's truly heart wrenching. So not fair. :'(
You're not thinking when you get married hunting and disease and then bang! You just never know! I would be curious to go down a family tree that had and has HD how many generations were affected by it in the same family! 🤟✌️
@@denisehadfield7995you don’t understand that OTHER people are NOT you and therefore are probably going to have THEIR OWN circumstances in place? Like maybe they didn’t know until after children were born?
Wow amazing team work, be so very proud. Guessing this was the best education and way to learn!! I've just watched from UK 🇬🇧 and learnt so much about this condition. Best wishes to a beautiful family, so sorry for the loss of a positive intelligent young lady. Xx
Amazing story and I pray every day my 15 year old at risk daughter does not carry the HD gene. Thank you and we as a family work every day to raise awareness. To all those affected by this disease you are all in my prayers.
This is absolutely incredible, thank you, for sharing this very personal account. I can't even begin to comprehend. I'm in the health care field but have never encountered huntingtons. This gave an absolutely touching account about what a family is going through. Thank you and God bless!
I am a registered nurse who has never seen this disease in real life. I am studying for a test, because of your video Huntington's means more to me than another disease listed in a text book. Thank you for sharing!
Or if you're going to have kids you have to do an IVF and pick out an embryo that is HD free to be implanted and that's what a lot of people do that can afford it or are more responsible or just don't have any that's the only way this will ever stopyou keep having kids it's going to continue like it has
This disease was only presented in 1993. People who had kids prior to that didn't know it was hereditary. It was a mystery illness. These days they can be tested for it.
Jim, I"m so sorry to hear about your dad. I don't know where you are, but get in touch with HD Society, if anyone can get you to all the resources you will need, it will be them. Always praying for a breakthrough, Angela
He's on medication to control his mood changes and currently gets help from the Huntington's disease association here in the UK. He also has to be tube fed through his stomach as he can no longer swallow very well. Also his speech is beginning to be affected as well as his memory
The first cure according to Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end. This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
I have drug induced tardive dyskinesia and Dystonia and akathisia… It’s very similar to these other things… It’s a bitter pill that it came from a pill… informedconsent is so important…read the labels
No these people keep having kids so it will never end as long as you have kids and you've had a history of the disease it's been hundreds of years in existence
This story had me in tears almost immediately and I agree that Meghan was an extraordinary and extremely lovable person who would move a heart of stone. The Dr and therapist were incredible people who loved their patient. I happen to think that their feelings had everything to do with the quality and meaning in their roles. The mom is a living saint and the bond mother and daughter shared was too big to stop because her life on earth ended. I believe they are still tight, though sadly Mom has to go on and face more heartbreak. It is the cruelest disease and devastating how much suffering happens in the families. 🙏♥
This is a very sad disease. My dad died of HD, grandmother, 5 aunts, 5 cousins, and still counting. I am now 57 have not been tested, but I feel like the gene is absent. It has been a very difficult road for me to see all my precious family members suffering from this disease. When they passed I was relieved and in some strange way you feel guilt for feeling this way. I don’t like to see people suffer, especially those you love. I hope a cure is found. I have nephews who are young and hope for them a future cleared of HD. My heart goes out to Megan’s mom. She did her best.
WTF. Who do you people think you are? For those of you with kids are you so sure they will always be healthy. My husband had HD and we had two children before we had even heard of this disease. Sadly my husband died at 55 and my son showed symptoms and chose to suicide at 33. My other son, now 38 seems to be ok thankfully. When asked what I would have done if I had known ahead of time, I saw it as a no brainer. Of course I would have had my children. I have known families with "healthy" children who have died or been paralyzed in road accidents, died from various forms of cancer, etc. There are no guarantees that children will be untouched by disease. Also, every year brings a cure or at least some better treatment closer. How dare some of you judge me, you probably judge others who for their own reasons choose not to have children. I could not imagine my life without having my husband and children and cherish every moment I had with them and continue to have with my son. HD families have enough to deal with. Educate yourself regarding this disease and realize the worth of every child.
this girl is so beautiful. i have seen another story of her prior that was not as in depth but if you see this mehgan i want you to know that you a beautiful inside and out. my little sister is now 15 and she was diagnosed last year with jhd... things are starting to change and progress with her. her father aunt and cousin all have or had hd...just dont be afraid to live love and laugh through your life.. i know things will be and are rou
My Mom lived with HD to the age of 75. My Aunt and Grandmother both lived into their 70's. Everyone has a chance of having a chronic illness or having a child with some sort of illness.
As a nurse and witnessing horrific illness, Huntington’s and ALS are the worst. My best friend is currently fighting ALS. I can’t fix it. I can only support her and her family through this heartbreaking journey.
As a nurse, HD was the worst thing I encountered in a patient. I cannot remember ever feeling that sad in my early career. In my later career I worked as a hospice nurse and still, HD was the worst death.
Such a terrible disease with no cure. Meghan was a lovely young lady, so brave and a beautiful soul. I have a family member who lost a sister to this disease. It was terrible. RIP Meghan and father. Prayers of strength to the mother who will lose the second daughter.
Duncan McLaren You should thank God for making cannabis such a miracle plant...Jesus died for all or sins and loves you very much...praying for you brother!
This lady has a soft, pisitive voice and I am glad that I watched thus budeo, So much information, I am praying for al, that gave these body destructive diseases. So sad!!
WHAT!! Megan's sister had a baby even after knowing about hd. I can't even. I'm trying very hard to understand and sympathise but why do people take chances?? I wouldn't want anyone to suffer because of me.
There is much you probably don't understand about HD. My daughter is symptomatic and one of the early on symptoms can be not considering the consequences of actions, especially when it comes to sexual relationships and children. If you have not been close to this illness, you will have a hard time understanding.
Carol Ann, you are absolutely correct. Sound reasoning seems to be one of the first signs from what I have observed. Also, if her sister does not carry the gene, then her children are safe. Have a second cousin who married a woman whose mother was dying of HD. They went ahead and had 3 children without testing. I told her mother in law this was so irresponsible. It is like holding a loaded gun to your child's head and playing Russian roulette. To me, this showed me she probably had it. Told my cousin's wife (mother in law), to be prepared for what was likely to come. She said their faith would carry them. Faith is great, but it does not treat or fix this. And it does not pay the bills for the long term care. So sad
She’s such a sweet young lady who has definitely left her stamp on the world around her! I can agree with the mom saying cooking a high calorie healthy diet can be challenging. One of my illnesses has my body thinking it’s running a marathon when I’m perfectly still so I do burn through calories but at the same time it is exhausting when you’re just sitting still and your heart is beating at 130. As a healthcare professional I find it amazing that this mother thought to ask her husband’s doctor before having kids but I imagine she’s angry having been told there was no risk when there was. If you ask people what they know about HD, many will say they saw the character of 13 on House which was one of the worst portrayals of HD I’ve ever seen. It is heartbreaking to see videos where parents have investigated prior to having kids so things like this don’t happen and get the go ahead but the kids slip through the cracks. Then there are the cases that anger me where people know their child will have no quality of life as the brain has not developed but they go ahead and have these kids and blast them out on UA-cam saying they’re completely aware of everything but it’s obvious that they just lay there and are being kept alive by artificial means. Why would you subject a child to that knowing beforehand that they would suffer. I’m sure the mothers of kids with HD that didn’t know beforehand would have done it differently bc having to watch your child die is not good at all! I will keep this family in my prayers! I’m sure Meghan is taking care of my dogs that are in heaven with her.
Baba Booey yes, and 20 years ago, it was thousands and not as accurate, in my case anyway. Not for HD, but a diff genetic condition, Long QT Syndrome. I had my son tested (thank God he was neg!) And it was $148!!
Nurses are supposed to be there for the patients and families now they are expected to do what doctors say they don't have time to do.,..it's sad ...... patients loved the time and company with their nurse... that's gone now.....o
My husband died of Huntingtons desease I also have three children which I'm scared for youngest youngest aged seven it has torn me apart you have good strength
A terrible terrible disease. I cared for one woman with HD in a nursing home. I walked her to the bathroom and she kicked both legs off the floor, a symptom of either uncontrolled movements or simply not understanding that this was unsafe. Thankfully, neither of us was hurt.
The hardest part of being a mom is not only watching your child be sick but watching two of your child's best friends dying of juvenile Huntington's disease... The minute both those kids turned 18 years old he had a vasectomy She went and got a tubal ligation and the reason why they were able to do this is because they could prove to the doctor that they both had huntingtons and so it was granted.... Then the next 4 years after that my daughter slowly watched her friends pass away... First the brother, but when his sister was dying my daughter took at the hardest,... So now we're going to jump onto a different kind of horror story medical diagnosis.... I was diagnosed with multiple sclerosis in 2003, and knowing what the different outcome is for different people... When my daughter found out I was sick She stopped at nothing to get to me to make sure that I wasn't going to die without her there... She packed up her baby She didn't know she was pregnant with my second grandson at the time, told her husband that she didn't want me to die alone and went from upstate New York to Idaho to make sure I didn't die without her there... Fast forward is now 2023 I have primary progressive multiple sclerosis which means I have upped my game... But I'm also a little over 20 years into it.... I'm not saying this for anyone feel sorry, but I know that once a cure for Huntington's is found a cure for MS can't be too much further behind... Every person there is watched this video or has a loved one with Huntington's God bless you because I worked at a nursing home and that's where I saw my first person with Huntington's and I know it's a nightmare for the family
A friend has let me know 2 siblings, and her dad had humingtons. I didnt even know what it was. These stories touch my heart. God bless!!! When Jesus comes back !!! Get to WAKE back up !! WITHOUT Huntington s!!!!!!
rough*..but i see you have family who love and care for you.. i know we dont know eachother but you can say that i will be a friend to you if you ever need it.. i wish you the best. stay positive....
such truly lovely inspirational People. Hopefully the promising new gene therapy and gene editing treatments will lead to effective way to both halt the condition and repair any damage caused by it. best wishes to all in the video.
Wow. Still Positive. My girl always says. I hate my LIFE. I tell her. STOP saying that. I LOVE U honey 🍯. I’m in your life. I’m not leaving you. Even later in life. This is gonna be hard for me see her decline. I’m in tears right now. People have NO IDEA the pain we see. I’m still confused what I should do. Stay as long as I can. Or She has 6 kids. I don’t know if they been tested yet? Do you get tested and know or wait till mid 30’s to test
The first of Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end. This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
Is there a way to make someone get tested? The reason I ask is I have a step-daughter whos grandmother died from Huntingtons Her mother is showing signs of having the disease but is refusing to get tested In the mean time step-daughter is having to take care of her younger brother and sister As well as mom is yelling at daughter for everything, and taking her anger out on daughter daughter has even been told to get out of the house by her mother. We are going to court to try to get daughter out
I’m a retired nurse, I’ve never had a patient with HC, but one of my coworkers developed HC. His mom died from it & his sister was in a nursing home, he was terrified to get tested, but the symptoms were very noticeable after a year. He was tested, he worked as long as he could, until he no longer could preform simple procedures like change an iv bag or chart legible. It was very sad. Even though he had only worked 15yrs our nurse manager fought the hospital board for his retirement from the hospital. RIP CS...my friend! ♥️
Med student here, wanting to learn more about HD in younger people. Thank you for being so brave and sharing your family's story.
Hi Megan,
Contact Meghan's mom, Cheryl thru the Huntington's Foundation...she could give you all that information from a patient perspective. Dr. Frank, Meghan's doctor, could help from the medical perspective. It is such a cruel disease. Good luck with your studies.
I see this comment is 6 years old. I’m so curious about where you are in your medical education and training, what speciality you choose to go into. Just by your comment I’d guess you are a fabulous doctor
As a nurse this was the cruelest disease I witnessed. Hope 1 day they get a break through for this awful disease. R.I.P to all the ones who’ve passed away from H.C. Love and light to them all. 💙❤️✨✨🕊
Also a retired/disabled nurse. I believe CRISPR9 gene editing will cure this disease and MANY others within 5-10 years.
I have a very different genetic condition, it isn't fatal, but I'm the age Meghan was in this video and just as homebound. When Meghan was talking about her mom that hit *hard*, my mother and I are exactly the same. I can't imagine what my life would be like without such a special giving person like her in my life. Appreciate your parents ❤️
As a nurse this is one of the saddest diseases I’ve witnessed. ALS is another.
My mom died of ALS- God bless her soul.
Horrendous diseases😓
EB seems horrendous and so does FOP.
I have ALS. As nurse, I witnessed 2 sisters with HD in different stages of the disease. Can you imagine watching you family member die, knowing that you have the same prognosis?
@@ChristineGilmore-nk9pz The mother of a friend of mine had HD and my friend developed both HD and MS. She died in 2019 at 49. What she went through was excruciating.
This mom is unfucknbelievable, so strong, so patient, she lost husband, loosing her youngest daughter, and she'll have to do it all over again when her older daughter's HD starts. And she does it with such a positive attitude. People like her are rare breed, i mean to me it would be humanly impossible. I would crawl in some dark place under blanket, and stayed there.
Meghan's mother is a tower of strength and courage. A rock, a hero.....
Very intelligent.
She's her mom.
I have symptomatic Huntington's Disease. I love all of the people who help me every day, and I can't imagine doing all of the emotional lifting by myself. It took me a while to understand that being responsible for my diagnosis and treatment was the right path for most of my family and friends.
My neurologist told me that if I quit drinking and smoking and self-medicating with cocaine -- I might have a better life. And she was right! She also told me about neurogenesis: a process that makes new, usable brain cells. All human brains make new, usable brain cells when we run and when we take SSRIs.
The first cure according to Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end. This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
This can be tested for now. In past generations families were embarrassed and didn't talk about it and people had kids without understanding the scope of the problem. It's devastating.
😔😔 I can’t imagine how hard for the mother to take care of her husband then her daughter i appreciate you,, I found out about this disease lately by a film so i kept searching about it to understand more then i found this video it really affected me ,, God bless her
They were divorced
to meghan's mother. I am so very sorry for your loss. For the loss of your husband and for the loss of meghan. I hope that you get through this really hard time ok.
I visited my hometown just recently and went to see my childhood friend, who recently developed the HD. She is 37 now and a mother of 4 children the youngest is only 3. My friend inherited the disease from her late mom and one of her brother got it too but he is in more progressive stage. Breaks my heart watching this video!
If you know Huntington disease is in the fam. DO NOT HAVE CHiLDREN
I am doing my PhD on understanding the disease mechanisms of Huntington’s disease. It breaks my heart into thousand pieces after seeing the severity of the disease and how it effects the patient.
To all families and anyone who has been diagnosed with this horrible and cruel disease. I really am so very sorry for everything that has had to go through this disease. I really do hope that we will have a cure for this horrible disease soon.
We do, people need to do genetic IVF or not have children biologically if they are positive
@@misfitm1457 Because the diagnostic tests we have now for Huntingtons did not exist in our grandparents generation, many people are not aware that Huntingtons is in their family. And because onset of symptoms is commonly after child bearing age, many people have children before finding out. Its really important not to add to peoples devastating and sad diagnosis by critisizing their personal life decisions without knowing their history.
What a horrible disease. The Love and kindness that have be shown to Meghan is just beautiful.
This is SO sad, symptomatic at 19 years old and gone before 30. So so so sad.
A very special family. Thank you for sharing so openly - it does make a difference to people, whether they have HD or not.
I’ve had many hospital stays in my life ... never met a nurse like you! 🙏🏻❤️💕👌🏻😍🤒🤕🤧😊😊😊😊😊
What an amazing psychologist. She reminds me of my own psychologist. I live with a severe mental illness that has serious physical side effects and at 31 my life is limited. My psychologist is like a second mother, while still remaining 100% professional. I also have an amazing psychiatrist and GP. These people really do take chronically ill young people and nurture them with all their being. I know that when I do pass, it will not have been for lack of the most appropriate treatment. I hope that whatever happens after death, Meghan is at peace, and that her incredible mother is able to keep going and be supported as much as she too needs to be.
You sound like a loving, compassionate woman! I’m sending a huge hug and wish you all the best!
A woman in my small hometown had Huntington's, so I was privy to it at a young age. Her two daughters had to watch their mother deteriorate horribly before dying in her 40's. Now they both have to live with the fear of developing it themselves.
Please, if Huntington's runs anywhere in your family, don't have children. You *might* have healthy kids, but that doesn't justify potentially sentencing your babies to a lifetime of suffering. Adopt, foster or mentor. Just please don't knowingly pass this awful disease to an innocent being who has no say in the matter.
they can get tested and see if they have it. And you can have prenatal testing done or in vitro and have a non huntington's gene baby
My mother started showing signs at around the age of 35, She's now 50 and is still functioning well enough to live without full time care, we're lucky.
I am 25, I have a LIFETIME of fantastic memories from a mother that loves me beyond anything else in the world. Yes its horrible to see someone you love so much degrade the way she is, but I would not swap her for anyone.
So many things can go wrong with the human body, people even die in freak accidents. Being in the military I've known many taken before their time... should their parents never have had them?
Huntington's in your family is hard enough to deal with - and I'd wager a fair amount that most who see this video will have it in their family. It is scary enough without such blinkered views being broadcast to them. To those people I say stay strong and good luck. No one would knowingly pass this illness onto their children.
Peace Knitty thank you for saying that. My mom is Dying of HD she had me! But I choose to not have children! My cousins did, but it was there choice.
Peace Knitty - Politeness be damned. Some issues are too serious to pussyfoot around. This is one of them. Knowingly reproducing when you have this disease is beyond selfish...it's downright cruel. Does the parent's "right" to have kids supersede the child's right to a healthy, happy life?
Kristine Spangler - So sorry to hear that. Thank you for making the selfless, responsible choice regarding reproduction. Best wishes to you.
Thank you so much for bringing this to us, we are dealing with beginning stages of HD right now
+das hasguns....much luck and love to you and your family....reach out...get support for all involved with you and your loved one
May the lord wrap his loving arms around you and guide your family to all the love and support that is out there for you
Dr Joel Wallach
This hits close to home. My son's grandma has Huntingtons & we don't know if his dad has it or not. It's 50/50.. I break down at the thought of my precious son potentially having this disease. Nobody deserves this. I've witnessed first hand the struggle of HD. It scares me even more seeing people getting it so young when on average it tends to hit you in your 40's. It's truly heart wrenching. So not fair. :'(
May I ask why did you decide to have children knowing there was a chance of Huntingtons being inherited to your baby?
You're not thinking when you get married hunting and disease and then bang! You just never know! I would be curious to go down a family tree that had and has HD how many generations were affected by it in the same family! 🤟✌️
I wish you the very best mom is just wonderful I have Ms and I struggle every day I send much love to you ❤️ ♥️
@@brothertn708 I don’t understand. If you have a 50 50 chance of giving it to your child, I wouldn’t have children
@@denisehadfield7995you don’t understand that OTHER people are NOT you and therefore are probably going to have THEIR OWN circumstances in place?
Like maybe they didn’t know until after children were born?
Wow amazing team work, be so very proud. Guessing this was the best education and way to learn!! I've just watched from UK 🇬🇧 and learnt so much about this condition. Best wishes to a beautiful family, so sorry for the loss of a positive intelligent young lady. Xx
Nurses working in palliative care are all amazing. That is why they choose that path of nursing.
Amazing story and I pray every day my 15 year old at risk daughter does not carry the HD gene. Thank you and we as a family work every day to raise awareness. To all those affected by this disease you are all in my prayers.
Meghan always inspires this kind of devotion...she is a special person.
This is absolutely incredible, thank you, for sharing this very personal account. I can't even begin to comprehend. I'm in the health care field but have never encountered huntingtons. This gave an absolutely touching account about what a family is going through. Thank you and God bless!
RIP Meghan, I hope you have found true peace now 🙏🏽💕
So she she has passed?
RIP ❤️
Rest in peace, Meghan. She passed in 2014. ❤
I am a registered nurse who has never seen this disease in real life. I am studying for a test, because of your video Huntington's means more to me than another disease listed in a text book. Thank you for sharing!
M
Having kids when you have this disease is so irresponsible
Or if you're going to have kids you have to do an IVF and pick out an embryo that is HD free to be implanted and that's what a lot of people do that can afford it or are more responsible or just don't have any that's the only way this will ever stopyou keep having kids it's going to continue like it has
This disease was only presented in 1993. People who had kids prior to that didn't know it was hereditary. It was a mystery illness. These days they can be tested for it.
My father has just been diagnosed with HD. Am starting to understand what it is and what happens to people with it. R.I.P megan. Such a brave angel
Jim, I"m so sorry to hear about your dad. I don't know where you are, but get in touch with HD Society, if anyone can get you to all the resources you will need, it will be them. Always praying for a breakthrough, Angela
thank you angela. im from the UK
hda.org.uk/
you are welcome Jim. peace be with you.
+Jim Bond do you have an update on your father?
He's on medication to control his mood changes and currently gets help from the Huntington's disease association here in the UK. He also has to be tube fed through his stomach as he can no longer swallow very well. Also his speech is beginning to be affected as well as his memory
Thank you for sharing, we are on a Project about this disease and it is so useful for us
The first cure according to Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end.
This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
God bless these people. I have strong hope that one day Parkinson's, HD, MS, ALS, muscular dystrophy and all that shit will be a thing of the past.
I have drug induced tardive dyskinesia and Dystonia and akathisia… It’s very similar to these other things… It’s a bitter pill that it came from a pill… informedconsent is so important…read the labels
With the availability of genetic testing hopefully this disease will be eradicated.
No these people keep having kids so it will never end as long as you have kids and you've had a history of the disease it's been hundreds of years in existence
This story had me in tears almost immediately and I agree that Meghan was an extraordinary and extremely lovable person who would move a heart of stone. The Dr and therapist were incredible people who loved their patient. I happen to think that their feelings had everything to do with the quality and meaning in their roles. The mom is a living saint and the bond mother and daughter shared was too big to stop because her life on earth ended. I believe they are still tight, though sadly Mom has to go on and face more heartbreak. It is the cruelest disease and devastating how much suffering happens in the families. 🙏♥
This is a very sad disease. My dad died of HD, grandmother, 5 aunts, 5 cousins, and still counting. I am now 57 have not been tested, but I feel like the gene is absent. It has been a very difficult road for me to see all my precious family members suffering from this disease. When they passed I was relieved and in some strange way you feel guilt for feeling this way. I don’t like to see people suffer, especially those you love. I hope a cure is found. I have nephews who are young and hope for them a future cleared of HD. My heart goes out to Megan’s mom. She did her best.
Such a Brave Beautiful young lady... Life can be so very cruel ...God-bless and R.I.P Meghan...
WTF. Who do you people think you are? For those of you with kids are you so sure they will always be healthy. My husband had HD and we had two children before we had even heard of this disease. Sadly my husband died at 55 and my son showed symptoms and chose to suicide at 33. My other son, now 38 seems to be ok thankfully. When asked what I would have done if I had known ahead of time, I saw it as a no brainer. Of course I would have had my children. I have known families with "healthy" children who have died or been paralyzed in road accidents, died from various forms of cancer, etc. There are no guarantees that children will be untouched by disease. Also, every year brings a cure or at least some better treatment closer. How dare some of you judge me, you probably judge others who for their own reasons choose not to have children. I could not imagine my life without having my husband and children and cherish every moment I had with them and continue to have with my son. HD families have enough to deal with. Educate yourself regarding this disease and realize the worth of every child.
Margaret Overton who are you talking to?
Margaret Overt
Margaret Overtonq
"
this girl is so beautiful. i have seen another story of her prior that was not as in depth but if you see this mehgan i want you to know that you a beautiful inside and out. my little sister is now 15 and she was diagnosed last year with jhd... things are starting to change and progress with her. her father aunt and cousin all have or had hd...just dont be afraid to live love and laugh through your life.. i know things will be and are rou
My Mom lived with HD to the age of 75. My Aunt and Grandmother both lived into their 70's. Everyone has a chance of having a chronic illness or having a child with some sort of illness.
Just be mindful this is a non curable disease.
As a nurse and witnessing horrific illness, Huntington’s and ALS are the worst. My best friend is currently fighting ALS. I can’t fix it. I can only support her and her family through this heartbreaking journey.
My Uncle Bill had this terrible disease!! I watched a sweet man turn into someone I did not even know.
As a nurse, HD was the worst thing I encountered in a patient. I cannot remember ever feeling that sad in my early career. In my later career I worked as a hospice nurse and still, HD was the worst death.
Such a terrible disease with no cure. Meghan was a lovely young lady, so brave and a beautiful soul. I have a family member who lost a sister to this disease. It was terrible. RIP Meghan and father. Prayers of strength to the mother who will lose the second daughter.
Nothing like that BOUstan accent. Bless this mother. She has been through so much. My heart goes out to this family ❤️
I noticed something different in her accent but I didn't know this is Boston's accent!
Moms (and Dad’s, too) like Meghan’s have strong hearts - both physically and spiritually. God bless that woman.
To skip the annoying intro, skip to 5:50.
Thank you
Sorry you were annoyed 🖕
May almighty God grant relief for hd suffers. ...
..
Duncan McLaren
You should thank God for making cannabis such a miracle plant...Jesus died for all or sins and loves you very much...praying for you brother!
Meghan you are touching my heart right now.
This us making me cry---I hate that their is no cure for HD and ALS i pray daily for all thst gave these diseases.
This lady has a soft, pisitive voice and I am glad that I watched thus budeo, So much information, I am praying for al, that gave these body destructive diseases. So sad!!
HD is very sad 😢 I pray they find a Cure Soon 🙏
WHAT!! Megan's sister had a baby even after knowing about hd. I can't even. I'm trying very hard to understand and sympathise but why do people take chances?? I wouldn't want anyone to suffer because of me.
There is much you probably don't understand about HD. My daughter is symptomatic and one of the early on symptoms can be not considering the consequences of actions, especially when it comes to sexual relationships and children. If you have not been close to this illness, you will have a hard time understanding.
Possibly she had genetic testing done in utero?
Carol Ann, you are absolutely correct. Sound reasoning seems to be one of the first signs from what I have observed. Also, if her sister does not carry the gene, then her children are safe. Have a second cousin who married a woman whose mother was dying of HD. They went ahead and had 3 children without testing. I told her mother in law this was so irresponsible. It is like holding a loaded gun to your child's head and playing Russian roulette. To me, this showed me she probably had it. Told my cousin's wife (mother in law), to be prepared for what was likely to come. She said their faith would carry them. Faith is great, but it does not treat or fix this. And it does not pay the bills for the long term care. So sad
She could have done IVF with pre implantation diagnosis, and only implanted an embryo without the gene.
Its in my family.. my mom her sister .. their mother ..
She’s such a sweet young lady who has definitely left her stamp on the world around her! I can agree with the mom saying cooking a high calorie healthy diet can be challenging. One of my illnesses has my body thinking it’s running a marathon when I’m perfectly still so I do burn through calories but at the same time it is exhausting when you’re just sitting still and your heart is beating at 130. As a healthcare professional I find it amazing that this mother thought to ask her husband’s doctor before having kids but I imagine she’s angry having been told there was no risk when there was. If you ask people what they know about HD, many will say they saw the character of 13 on House which was one of the worst portrayals of HD I’ve ever seen. It is heartbreaking to see videos where parents have investigated prior to having kids so things like this don’t happen and get the go ahead but the kids slip through the cracks. Then there are the cases that anger me where people know their child will have no quality of life as the brain has not developed but they go ahead and have these kids and blast them out on UA-cam saying they’re completely aware of everything but it’s obvious that they just lay there and are being kept alive by artificial means. Why would you subject a child to that knowing beforehand that they would suffer. I’m sure the mothers of kids with HD that didn’t know beforehand would have done it differently bc having to watch your child die is not good at all! I will keep this family in my prayers! I’m sure Meghan is taking care of my dogs that are in heaven with her.
my grandmother died from HD at 35 and my mother is struggling with it now. I wish I could go get tested..
Hannah ns you can at 18
Hannah ns Praying for you Hannah xx
unless you're in the US without insurance...
Synick true but genetic testing is only a few hundred dollars..in this case it's worth it.
Baba Booey yes, and 20 years ago, it was thousands and not as accurate, in my case anyway. Not for HD, but a diff genetic condition, Long QT Syndrome. I had my son tested (thank God he was neg!) And it was $148!!
Lost my father to ALS it’s destroyed me this disease is life stolen so horribly
Meghan lives every day to the fullest! Love and health and happiness to your sister and your entire family!
Meghan is an angel. strong and very happy hearted person.
This is so tragic.. Meghan is such a lovely girl..
Nurses are supposed to be there for the patients and families now they are expected to do what doctors say they don't have time to do.,..it's sad ...... patients loved the time and company with their nurse... that's gone now.....o
So very very sad. Heartbreaking
Rest in peace beautiful Meghan ❤
My husband died of Huntingtons desease I also have three children which I'm scared for youngest youngest aged seven it has torn me apart you have good strength
It's been four years since you commented. How are they and how are you?
Life is not fair😿
Ann Marie Perry that's normal.
I feel for this woman :( so sad...
A terrible terrible disease. I cared for one woman with HD in a nursing home. I walked her to the bathroom and she kicked both legs off the floor, a symptom of either uncontrolled movements or simply not understanding that this was unsafe. Thankfully, neither of us was hurt.
update on the sister?/
is her sister doing ok
What a beautiful soul
Thanks for sharing your story.
My respect for telling the story ,My son is now 11 and whe now sinds he was 6 that he have JHD ,
xxx from the netherlands
Claudia Desmet how is your son doing? 😔
The hardest part of being a mom is not only watching your child be sick but watching two of your child's best friends dying of juvenile Huntington's disease... The minute both those kids turned 18 years old he had a vasectomy She went and got a tubal ligation and the reason why they were able to do this is because they could prove to the doctor that they both had huntingtons and so it was granted.... Then the next 4 years after that my daughter slowly watched her friends pass away... First the brother, but when his sister was dying my daughter took at the hardest,... So now we're going to jump onto a different kind of horror story medical diagnosis.... I was diagnosed with multiple sclerosis in 2003, and knowing what the different outcome is for different people... When my daughter found out I was sick She stopped at nothing to get to me to make sure that I wasn't going to die without her there... She packed up her baby She didn't know she was pregnant with my second grandson at the time, told her husband that she didn't want me to die alone and went from upstate New York to Idaho to make sure I didn't die without her there... Fast forward is now 2023 I have primary progressive multiple sclerosis which means I have upped my game... But I'm also a little over 20 years into it.... I'm not saying this for anyone feel sorry, but I know that once a cure for Huntington's is found a cure for MS can't be too much further behind... Every person there is watched this video or has a loved one with Huntington's God bless you because I worked at a nursing home and that's where I saw my first person with Huntington's and I know it's a nightmare for the family
A friend has let me know 2 siblings, and her dad had humingtons. I didnt even know what it was. These stories touch my heart. God bless!!! When Jesus comes back !!! Get to WAKE back up !! WITHOUT Huntington s!!!!!!
Some of Meghan's symptoms remind me of my son's severe Tourette. So stressful, especially for a highly sensitive person.
rough*..but i see you have family who love and care for you.. i know we dont know eachother but you can say that i will be a friend to you if you ever need it.. i wish you the best. stay positive....
Amber r
I would like to reachh out. Im in trouble with issues with cognitive issue s.
I am sure she is now in Heaven, God is with her.
such truly lovely inspirational People. Hopefully the promising new gene therapy and gene editing treatments will lead to effective way to both halt the condition and repair any damage caused by it. best wishes to all in the video.
The sound is clear and too low to understand.Too bad.😢
I found out about this desease in my phyc training, and it hit me hard. Very hard.
Sad...
Mom you are amazing
Megs was doomed. Audience wishes her grieving survivors all the best. Cheers!
tragic disease
Wow. Still Positive. My girl always says. I hate my LIFE. I tell her. STOP saying that. I LOVE U honey 🍯. I’m in your life. I’m not leaving you. Even later in life. This is gonna be hard for me see her decline. I’m in tears right now. People have NO IDEA the pain we see. I’m still confused what I should do. Stay as long as I can. Or She has 6 kids. I don’t know if they been tested yet? Do you get tested and know or wait till mid 30’s to test
I'm so sorry 😞
Y husband passed with this disease n not enough doctors are as aware of disease. It's like they're learning from us than helping us.
It’s in my family, I can relate
Suvh a kjbd doctor---to care so much for both these medical personnel--I pray someone Wil find a cure for HD
Found out last year my ex who I have 2 wee girls aged 6+4 to has Huntingtons. I'll just have to deal with whatever's thrown at us!
May the lord wrap you and your family up in his loving arms and bless you all.May he spare your dear sweet children of this horrible disease.
Hoping neither one of them have it!! My husbands mother died from it and now he has it. It’s horrible.
Lauren W Oh my goodness, that’s awful. I’m praying for you and your family. You’ll be in my thoughts ❤️
The first of Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end.
This case was not the only one of successful medical attention of this Illness. Information without bias are to find for everyone in the web-sides “Journal of Orthomolecular Medicine”.
God bless your family. ❤️
i wonder what they thought johns mother had..
My aunt had HD, they had 5 children and all are dead now.
That is so incredibly sad, I'm so sorry.
Is there a way to make someone get tested? The reason I ask is I have a step-daughter whos grandmother died from Huntingtons Her mother is showing signs of having the disease but is refusing to get tested In the mean time step-daughter is having to take care of her younger brother and sister As well as mom is yelling at daughter for everything, and taking her anger out on daughter daughter has even been told to get out of the house by her mother. We are going to court to try to get daughter out
We have a relative with Huntington’s. Cruel disease
is the description edited?
A den, a living to in can be made into a small bedroom. A 1/2 bath for sponges.
So sad. My heart goes out to you.
How old is Meghan?
She died, check the description of the vid
So much love and strength sent to you all 💖
Thank yoooooou so much 💝
🌟MEGAN🌟
🌟MUM🌟
🌟DAD🌟
🌟CAITLIN🌟
Not sure Has Meghan passed ? So very tragic and so heartbreaking.
Meghan is beautiful! ❤️🙏🏻
I hope somehow expecting parents or before people planning a family . Please get a family work up.