When I was 19 I was in hospital for five days having tests and the lady next to me had Huntingdons. She had been adopted and never knew her family history. She married and had two boys. One came to visit the other refused as was so angry at her for having this disease. How could that possibly be her fault. She said had she known she would never have married. She was lovely, talking was hard for her. She was so comforting to me as I was unwell but didn’t know why. This beautiful soul who was dying from the cruelest disease was helping me deal with my illness.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. Living with a disease or illness in the family is never easy, and each person deals with it differently. It's great to hear that a HD community member was able to make an impact on your life, we are sure that your compassion towards her also went further then you know. We also hope that you were able to recover from your illness, please know that you are more than welcome to contact us at anytime for a chat 🙂
Hi Peter, thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We would love to invite you to our Huntington's Community Connect forum (huntingtonsaustralia.com.au/). This is your safe space to connect with the HD community, share and read experiences and ask questions that you may have. We are always here to help, please do not hesitate to reach out if you need ☺
I have no idea why, but this disease captures my attention. As a nurse, my heart just cries for the affected. I am following all the research for a cure.
It has captured my attention as well. I worked at a nursing home in the 70's. One of the patients had HD. I've never forgotten her. It's a horrible disease that just isn't fair. I hope a cure is found soon.
ALS is worse. Same thing happens but you keep your wits about you. So can see your body dying. Huntingtons you lose your mind too. So more of a blessing.
It is heartening to hear that a person from your professional background has taken an interest in the HD community. We hope that you may specialise in this area and have the opportunity to work directly with this special community.
My father died of this disease. It was heartbreaking to watch this man who had fought in Burma in ww2 fall to pieces in front of my eyes. I just could not cope with the care he needed and he was put in hospital. He did not want to go. I still beat myself up and wish I could have done better. I took the test so that I could make a plan on how to live my life if I tested positive. Fortunately I tested negative and have just turned 67. It's a big decision to make but personally I felt strong enough in myself to want to know and I was given all the information and support before I. My father was the most beautiful person I ever met ❤ 🙏
Hun, you did the best you could under the circumstances, at the time, and you have to remember that. As they say, “Hindsight is 20/20,” and while you may look back and perceive failures, you may also fail to see your reality at that time. As time passes and the older we get, we learn more, understand more, & may see the past differently, but that doesn’t mean you did something wrong when you were forced to deal with your dad’s diagnosis & death! You did what you could back then and your dad will always love you, will always be thankful for having you in his life, and be proud of how you did your best to care for him!💞
Thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We would like to take this opportunity to honour your father's bravery, not only serving in WW2 but also living with the challenges of HD. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
My 11 yr old cousin was diagnosed with Huntington's Chorea when his father was dying of it. The family cut off all contact. He's never had a girlfriend (didn't want any child to be born with it) and has lived in a care home for years. It's a tragic curse.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
As a nurse I have cared for 2 patients with Huntington’s. Broke my heart. We treated symptoms and provide supportive care which is limited except for hands on personal care, feeding, love, socialization, provide safe environment
So that means either you or your husband had it? I know it's a 50/50 chance of getting it if one parent has it! My girlfriend's cousin got married and he was tested for HD he did come up positive however, they still have three children!
@@winros I met a couple once where one parent had HD and they had a number of kids. Turned out it was a dark family secret & they hadn’t been told until they’d had all their kids. So sad…and not as uncommon as I’d hope. I know it’s not for everyone and not an easy road, but with IVF & preimplantation diagnosis if people are aware of HD in the family at least there’s now a chance of having kids without fear…
I know a family devastated by this illness. Young married couple had four children. Then the illness was discovered in the husband quite young. He had been adopted and had no medical history. He passed after a horrific experience with it. Then one of the sons as a young man discovered he had it. Then the next son and one of the daughters. One daughter didn’t get it and doesn’t carry the gene. Before one of the sons became symptomatic he had a child. She was raised by the sister and not allowed to be tested until she’s 18. Her mother also passed early for an unknown reason.
Thank you for sharing your story. My son is 45 and struggles to be understood as his speech is deteriorating, moods swings are normal and anger increases with frustration. My adult grandchildren have not been tested yet but are thinking about doing so. My son can be loving and kind and those are the days I love. The other days are hard ❤
Thank you for reaching out and sharing your experiences Santena. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Thank you on behalf of the family. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
This is so heartbreaking, and I am praying for a cure---now. I wish that people would have genetic testing and use in vitro of healthy, non-HD embryos to have children, if HD runs in the family. Denial does nothing except perpetuate the misery. There are people at risk, who don't want to know their results, but still have the test and then use in vitro for pregnancies. They are no told their own results and are never told if there are HD embryos; they just have screen embryos implanted.
Absolutely , to risk passing on an incurable disease with no treatment is living in denial, . And I think all IVF and genetic testing should be free for them .
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
I have nursed Huntington's patients and it is absolutely heartbreaking to watch the deterioration of these people. These patients are tortured by their own body failing them and miserably so. Heartbreaking for the medical community knowing there's really nothing any of us can do to alleviate their soul-sucking agony, by way of medication, not even for a few hours.
It is heartening to hear that a person from your professional background has taken an interest in the HD community. We are confident that the patients that you have helped would have been appreciative of your empathy and support. Thank you for your care of those persons living with HD, it is much appreciated.
I am not in the medical profession but I have become interested in Huntingdons and read everything I can about it.It is the cruelest disease and i sincerely hope they will find a cure.
Yes it is the.only cure but people seem willing to take a chance hoping for a cure by the timebthe child gtows up.They have brrn talking cures for so many years I cant see it coming.in my lifetime
Thank you for your comment and interest in the impacts of Huntington's Disease on families. Please do not hesitate to continue your education about this disease and we would encourage you to follow us via our website (huntingtonsvic.org.au/), facebook and instagram. The more you learn about this community, you will admire their resilience and strength to live a life of dignity.
In 1976 I started training in a psychiatric hospital. I have very mixed memories of a lady who was only in her 30’S with three boys, she had HD. And it broke my heart at the time. In 45 years I never saw another person with it. But it spiked an interest in my thinking at a very young age. I believe it’s more prevalent in India ? But it’s so heartbreaking 💔 I’ve lost a son and Grandson so I know how tough it is. Your a beautiful family. So sorry
@Lady Laois A dear friend's husband had Huntingdons. His family were from Mauritius. They had 3 children and 1 tested positive for the condition, although she has no symptoms yet. It passes from parents to children and grandchildren. It's a horrible condition to see.
Unfortunately, we did not have the knowledge of the disease in the 70s that we do now. We are grateful that you were there to support this young woman as she lived with HD. Thank you for sharing your experience and we wish you and your family all the best.
I am so sorry for the loss of your husband, son & your other 6 family members 💔 Bless them all 🤍 You are an incredibly strong woman to have gone through so much. Big hugs to you xx
My paternal grandfather had it. Many of his family members had it as well. My uncle and aunt have already passed away because of it and about half of my 1st cousins have it. My dad didn't have it and neither do I or my son. It has to come from your parent. It doesn't skip a generation. If I'm lucky (unlucky actually) I'll get to watch many of my cousins loose balance, ability to walk, talk and eventually eat. My grandpa and aunt both fell and died from the effects of the fall however my favorite uncle basically gave up. He didn't want to live that way. I believe he was mortified. He became very weak and died. Refused rehabilitation or any form of exercise and basically wasted away. His numbers were the highest. I don't understand but I do know his daughter's numbers are high as well. I believe she learned from her dad though not to give up. She is a fighter. She won't give up without one Hell of a fight. I wish she'd start using a cane though. Her balance is already off. She even stopped driving already at 45. It's a horrible disease. I hate it.. 💔
Thank you for reaching out and sharing your family's experiences of the impact of HD across generations. We know the family will be touched that their experience has relevance to you. Please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
My uncle xyz passed away of this ... My cousin his daughter x has this debilitating condition... she was such a powerful intelligent excited lady and now I hear that this Huntington's is getting the better of her and it is so sad to she can hardly walk I have heard .. Sadly its congenital and hereditary and my other cousin the brother z , I hear does not have it... I have not spent much time with them Apart from childhood ...my mam was married to my dad the youngest brother.... And all I was told in childhood was my grandad passed away ...when daddy xyz. was only about 5 years old..... His other brother my uncle abc. he is alive and well....about 3 or 4 years older than my daddy... so me I'm 48 and my brother z is ...43.... my dad the youngest told me don't worry he was tested and he's okay borderline?? What does that mean I asked daddy, and he says live life and don't worry you and your brother will be ok !!! But are we...really I think? maybe my daddy never got tested .. or hes in denial and not telling me the whole facts.. my dad said that he was Borderline I have heard and read that their children have a 50% chance of having it and this was the fact with my cousins sister has it and the brother does not. I'm a retired midwife and I'm only 48... I retired due to pain and depression and supposedly I'm diagnosed with lupus and I say this as I have never been tested yet. Huntington's disease but hopefully.. I'm going to get tested .. So I can plan and prepare my self for this condition ... my middle uncle alive and well has 2 daughters about 40 and about 42 ish.. They seem.okay...and stated they don't want to know .. I also had cataracts..as my father did..we both have had implanted lenses and the cataracts taken out along with the lenses...so I have plastic lenses in my eyes..I was 18 when I first had the operation I had one eye done then the other eye done 30 years ago when the operation was done it was amazing I could see so well but I still need to wear varifocals and protect my eyes from sunshine two of my children have cataracts I have 4 adult children... ... and I don't know yet weather my young granddaughter's have cataracts but I do know a few of them wear glasses and I have 6 granddaughter's from 2 year old up to 11 year old... god bless all of you families and people out there who have lost someone to Huntington's disease god bless all of you take care AMEN ...XXXXXX xxx
I lost my husband in June to complications of Huntington’s. His symptoms did not begin until he was 60 years old. His sister died at 58 and his father died at 64. All Huntington’s Disease.
Thank you for reaching out and sharing your and your husband's experience of living with the impacts of HD. We know the family will be touched that their experience has relevance to you. Please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/. We also have a Remembrance Service each year to honour those that we have lost and the contributions they have made to our lives. If you wish to include your husband in our Remembrance Honour Roll for next year, please email us at info@huntingtonsvic.org.au.
Honestly no family deserves to go through this , this disease is just so depressing just to see your loved one slowly losing their mind and can’t do normal things and the fact that they can’t even express their emotions on what’s even going on it just slowly takes over their brain without even knowing and all of a sudden they speak less and do less things and the fact seeing them suffer and cant even do anything but help feed them until it’s their time to go and the fact that this disease is hereditary makes their kids not even want to have kids because their afraid they will have it and passing it down to their kids and make them go through the same thing just passing it down generations which is to fucking depressing to deal with making them lose their minds killing their mental health having them paranoid thinking they have the disease until they get tested and find out but no one wants to find out that they have it or not it’s just to much to think about like what kind of fucking world do we live in my mom had HD at a way to fucking early age it was just way to fucking soon and the fact that I had to see her go through it at a very young age (10 years old) and my siblings which are older we had no idea what it was we didn’t think much of it because we were still kids but now that we are matured and grown up we realize that she was showing so much symptoms it was so sad because no one knew her family passed down HD and the fact that we went through that none of us want kids so they have to go through what we went through it’s just way to depressing to go through honestly I really do hope there is a cure for it no one deserves to go through this.
Thank you for sharing your personal experience and we know the family will be pleased to know that their experience had relevance for you. You and your family have evidently had a really tough time and we are here for you if you need us. Please do not hesitate to make contact with us at huntingtonsvic.org.au/contact/ or via our peer forum. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
My sister in law and her sister both tested negative ,I was so happy my nephews were safe. Sadly both my sister in law and her sister passed away last Sept. both were in their 50’s .
Thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We hope you and your family have the support you need, please reach out to us if you need any further support.
I looked after a lovely man with this disease,it is a devastating disease. Please I urge you to make a plan to communicate, when things got dire.It makes the person be a little less frustrated if you can understand them a little better .It’s the worst disease ,I think,because it runs in families , so so sorry for you and your family x x
Thank you for your support and advice. It is only through community members sharing common experiences that you are able to take control of a situation that appears to be chaotic at times. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
We want to take this opportunity to thank you for your service to those patients in the local hospice. Thank you for your support of this family, it is much appreciated
Thank you for your comments. Making decisions in relation to healthcare, supports required and accommodation needs is a complex and difficult one. We hope that you were able to receive the support that you needed at the time to transition your loved one into care. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/.
My amazing beautiful adventurous active 34 yr old brother in law was diagnosed with Huntington's 3 yrs ago. They have told him he probably won't live more than 10 years. He's got 2 small children. The children can't be tested for the gene until they are 18
Thank you for sharing your personal experience. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Thank you for empathising with this family's story. We know it will mean a great deal to them, particularly given how hard it is to share your personal experience with a public that is unknown to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
My grandmother had Huntingtons disease. Two of her children had it but thank God my mother did not. Because of this we were all be able to have children without the fear.
Thank you for reaching out and sharing your experiences with HD. We know the family will be touched that their experience has relevance to you. We hope your family is receiving the support they need, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Thank you for reaching out to us. Making decisions in relation to healthcare, supports required and testing is a complex and difficult one. We hope that you and your family are receiving the support that you need. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Thank you for sharing your personal experience, and we know the family will be pleased that their story had relevance for you. We hope that you are receiving the support that you need.
Thank you for sharing and please do not hesitate to reach out if you or your family require any assistance from us huntingtonsvic.org.au/contact/. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
What a brave family, indeed! The book written by Lisa Genova " Living with the O'Briens " is a beautiful book about a family confronted to this disease.
We agree, this is a wonderful, caring and resilient family who share their experiences in the hope of helping other families who are living with the impacts of HD. We also enjoyed reading the book "Living with the O'Briens"!
If you would like to access information in relation to current research initiatives, please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
Thank you for your interest and support of the family. Sharing their family story is their way to make a difference to those impacted by HD, regardless of their gene status.
Thank you for sharing your thoughts and hope for Huntington's Disease families. We are with the HD community each step of the way. HD Buzz is a great way to stay up to date with the latest news on research in the HD space en.hdbuzz.net/. Please do not hesitate to reach out if you have any questions.
Thank you for sharing and please do not hesitate to reach out if you or your friend require any assistance from us huntingtonsvic.org.au/contact/. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
This disease and its impacts are complex and far reaching, therefore there is no right or wrong answer in relation to genetic testing. It is an individual decision. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Thank you for reaching out to us. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one, with many personal considerations. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
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When I was 19 I was in hospital for five days having tests and the lady next to me had Huntingdons. She had been adopted and never knew her family history. She married and had two boys. One came to visit the other refused as was so angry at her for having this disease. How could that possibly be her fault. She said had she known she would never have married. She was lovely, talking was hard for her. She was so comforting to me as I was unwell but didn’t know why. This beautiful soul who was dying from the cruelest disease was helping me deal with my illness.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. Living with a disease or illness in the family is never easy, and each person deals with it differently. It's great to hear that a HD community member was able to make an impact on your life, we are sure that your compassion towards her also went further then you know. We also hope that you were able to recover from your illness, please know that you are more than welcome to contact us at anytime for a chat 🙂
My father and brother died from Huntington's disease, my sister and myself have it too these stories are helpful in not feeling alone. 😊
Hi Peter, thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We would love to invite you to our Huntington's Community Connect forum (huntingtonsaustralia.com.au/). This is your safe space to connect with the HD community, share and read experiences and ask questions that you may have. We are always here to help, please do not hesitate to reach out if you need ☺
My Grandmother, my father had Huntington and have passed away. My sister and I now have it. And my daughter has tested positive.
I have no idea why, but this disease captures my attention. As a nurse, my heart just cries for the affected. I am following all the research for a cure.
It has captured my attention as well. I worked at a nursing home in the 70's. One of the patients had HD. I've never forgotten her. It's a horrible disease that just isn't fair. I hope a cure is found soon.
Same I’m a retired nurse
I am working with a seven year old girl that has progressive Juvenile Huntington's. A cruel disease indeed.
ALS is worse. Same thing happens but you keep your wits about you. So can see your body dying. Huntingtons you lose your mind too. So more of a blessing.
It is heartening to hear that a person from your professional background has taken an interest in the HD community. We hope that you may specialise in this area and have the opportunity to work directly with this special community.
My father died of this disease. It was heartbreaking to watch this man who had fought in Burma in ww2 fall to pieces in front of my eyes. I just could not cope with the care he needed and he was put in hospital. He did not want to go. I still beat myself up and wish I could have done better. I took the test so that I could make a plan on how to live my life if I tested positive. Fortunately I tested negative and have just turned 67. It's a big decision to make but personally I felt strong enough in myself to want to know and I was given all the information and support before I. My father was the most beautiful person I ever met ❤ 🙏
I commend you. I haven't heard of anyone else being tested for anything. Remember when it was going to stop Tay-Sachs and sickle cell anemia?
Hun, you did the best you could under the circumstances, at the time, and you have to remember that. As they say, “Hindsight is 20/20,” and while you may look back and perceive failures, you may also fail to see your reality at that time. As time passes and the older we get, we learn more, understand more, & may see the past differently, but that doesn’t mean you did something wrong when you were forced to deal with your dad’s diagnosis & death! You did what you could back then and your dad will always love you, will always be thankful for having you in his life, and be proud of how you did your best to care for him!💞
Thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We would like to take this opportunity to honour your father's bravery, not only serving in WW2 but also living with the challenges of HD. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
Oh my! I wish I could give you hug
You just did. ❤🤠👍🙏
My 11 yr old cousin was diagnosed with Huntington's Chorea when his father was dying of it. The family cut off all contact. He's never had a girlfriend (didn't want any child to be born with it) and has lived in a care home for years. It's a tragic curse.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
As a nurse I have cared for 2 patients with Huntington’s. Broke my heart. We treated symptoms and provide supportive care which is limited except for hands on personal care, feeding, love, socialization, provide safe environment
😢
Heartbreaking. What a brave woman you are. Bless you all.
Thank you on behalf of the family.
my son died of this disease and he was only 30. He showed signs of it when he was 16 but didn't know then it was the start of it.
Damn! He a Junior Huntingtons! I'm so sorry. 😞
So sorry, I can’t imagine how tough that must have been for everyone…and I know how devastating HD can be :(
So that means either you or your husband had it? I know it's a 50/50 chance of getting it if one parent has it!
My girlfriend's cousin got married and he was tested for HD he did come up positive however, they still have three children!
@@winros I struggle with that one, but then in fairness I’ve not been in that position.
@@winros I met a couple once where one parent had HD and they had a number of kids. Turned out it was a dark family secret & they hadn’t been told until they’d had all their kids. So sad…and not as uncommon as I’d hope. I know it’s not for everyone and not an easy road, but with IVF & preimplantation diagnosis if people are aware of HD in the family at least there’s now a chance of having kids without fear…
I know a family devastated by this illness. Young married couple had four children. Then the illness was discovered in the husband quite young. He had been adopted and had no medical history. He passed after a horrific experience with it. Then one of the sons as a young man discovered he had it. Then the next son and one of the daughters. One daughter didn’t get it and doesn’t carry the gene. Before one of the sons became symptomatic he had a child. She was raised by the sister and not allowed to be tested until she’s 18. Her mother also passed early for an unknown reason.
Thank you for sharing your story. My son is 45 and struggles to be understood as his speech is deteriorating, moods swings are normal and anger increases with frustration. My adult grandchildren have not been tested yet but are thinking about doing so. My son can be loving and kind and those are the days I love. The other days are hard ❤
Thank you for reaching out and sharing your experiences Santena. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
You are a beautiful, amazing family - thank you so much for sharing your story with the world. ❤
Thank you on behalf of the family for your support.
I'm so sorry for your losses. I lost an aunt and a cousin to this awful disease.
Thank you on behalf of the family. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
This is so heartbreaking, and I am praying for a cure---now. I wish that people would have genetic testing and use in vitro of healthy, non-HD embryos to have children, if HD runs in the family. Denial does nothing except perpetuate the misery. There are people at risk, who don't want to know their results, but still have the test and then use in vitro for pregnancies. They are no told their own results and are never told if there are HD embryos; they just have screen embryos implanted.
Absolutely , to risk passing on an incurable disease with no treatment is living in denial, . And I think all IVF and genetic testing should be free for them .
Thats a given..why even consider having kids when the disease can kill your children. Please tell me why.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Who pays for the genetic testing? I know you're not suggesting people who can't afford genetic testing aren't deserving of children.
I have nursed Huntington's patients and it is absolutely heartbreaking to watch the deterioration of these people. These patients are tortured by their own body failing them and miserably so. Heartbreaking for the medical community knowing there's really nothing any of us can do to alleviate their soul-sucking agony, by way of medication, not even for a few hours.
It is heartening to hear that a person from your professional background has taken an interest in the HD community. We are confident that the patients that you have helped would have been appreciative of your empathy and support. Thank you for your care of those persons living with HD, it is much appreciated.
I am not in the medical profession but I have become interested in Huntingdons and read everything I can about it.It is the cruelest disease and i sincerely hope they will find a cure.
Would the cure be NOT having children and not passing it to them?? Then it would die off by itself.
@@GwenRN That is the ONLY "cure". Yes!
Yes it is the.only cure but people seem willing to take a chance hoping for a cure by the timebthe child gtows up.They have brrn talking cures for so many years I cant see it coming.in my lifetime
Thank you for your comment and interest in the impacts of Huntington's Disease on families. Please do not hesitate to continue your education about this disease and we would encourage you to follow us via our website (huntingtonsvic.org.au/), facebook and instagram. The more you learn about this community, you will admire their resilience and strength to live a life of dignity.
@@GwenRNspot on. It’s so selfish they know they have it yet still have kids
In 1976 I started training in a psychiatric hospital. I have very mixed memories of a lady who was only in her 30’S with three boys, she had HD. And it broke my heart at the time. In 45 years I never saw another person with it. But it spiked an interest in my thinking at a very young age. I believe it’s more prevalent in India ? But it’s so heartbreaking 💔 I’ve lost a son and Grandson so I know how tough it is. Your a beautiful family. So sorry
You have been through so much, my thoughts are with you....
@Lady Laois A dear friend's husband had Huntingdons. His family were from Mauritius. They had 3 children and 1 tested positive for the condition, although she has no symptoms yet. It passes from parents to children and grandchildren. It's a horrible condition to see.
Unfortunately, we did not have the knowledge of the disease in the 70s that we do now. We are grateful that you were there to support this young woman as she lived with HD. Thank you for sharing your experience and we wish you and your family all the best.
I am so sorry for the loss of your husband, son & your other 6 family members 💔 Bless them all 🤍
You are an incredibly strong woman to have gone through so much. Big hugs to you xx
Thank you for your support on behalf of the family
My paternal grandfather had it. Many of his family members had it as well. My uncle and aunt have already passed away because of it and about half of my 1st cousins have it. My dad didn't have it and neither do I or my son. It has to come from your parent. It doesn't skip a generation. If I'm lucky (unlucky actually) I'll get to watch many of my cousins loose balance, ability to walk, talk and eventually eat. My grandpa and aunt both fell and died from the effects of the fall however my favorite uncle basically gave up. He didn't want to live that way. I believe he was mortified. He became very weak and died. Refused rehabilitation or any form of exercise and basically wasted away. His numbers were the highest. I don't understand but I do know his daughter's numbers are high as well. I believe she learned from her dad though not to give up. She is a fighter. She won't give up without one Hell of a fight. I wish she'd start using a cane though. Her balance is already off. She even stopped driving already at 45. It's a horrible disease. I hate it.. 💔
Thank you for reaching out and sharing your family's experiences of the impact of HD across generations. We know the family will be touched that their experience has relevance to you. Please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
@@huntingtonsvictoria3391 Thanks. I'll tell my cousin's about it. They may want to reach out.. 💞
You just did. Thank you for the hug. Luv yer. Thank you. I can't it breaks my heart. Love to all.
Hi Victor, on behalf of the family thank you for your support, it is much appreciated.
My uncle xyz passed away of this ...
My cousin his daughter x has this debilitating condition... she was such a powerful intelligent excited lady and now I hear that this Huntington's is getting the better of her and it is so sad to she can hardly walk I have heard
..
Sadly its congenital and hereditary and my other cousin the brother z , I hear does not have it... I have not spent much time with them Apart from childhood ...my mam was married to my dad the youngest brother....
And all I was told in childhood was my grandad passed away ...when daddy xyz. was only about 5 years old.....
His other brother my uncle abc. he is alive and well....about 3 or 4 years older than my daddy... so me I'm 48 and my brother z is ...43.... my dad the youngest told me don't worry he was tested and he's okay borderline?? What does that mean I asked daddy, and he says live life and don't worry you and your brother will be ok !!! But are we...really I think? maybe my daddy never got tested .. or hes in denial and not telling me the whole facts.. my dad said that he was Borderline I have heard and read that their children have a 50% chance of having it and this was the fact with my cousins sister has it and the brother does not. I'm a retired midwife and I'm only 48... I retired due to pain and depression and supposedly I'm diagnosed with lupus and I say this as I have never been tested yet. Huntington's disease but hopefully.. I'm going to get tested ..
So I can plan and prepare my self for this condition ... my middle uncle alive and well has 2 daughters about 40 and about 42 ish..
They seem.okay...and stated they don't want to know ..
I also had cataracts..as my father did..we both have had implanted lenses and the cataracts taken out along with the lenses...so I have plastic lenses in my eyes..I was 18 when I first had the operation I had one eye done then the other eye done 30 years ago when the operation was done it was amazing I could see so well but I still need to wear varifocals and protect my eyes from sunshine two of my children have cataracts I have 4 adult children... ... and I don't know yet weather my young granddaughter's have cataracts but I do know a few of them wear glasses and I have 6 granddaughter's from 2 year old up to 11 year old... god bless all of you families and people out there who have lost someone to Huntington's disease god bless all of you take care AMEN ...XXXXXX xxx
May they Rest In Peace and god bless this family.
Thank you on behalf of the family.
I lost my husband in June to complications of Huntington’s. His symptoms did not begin until he was 60 years old. His sister died at 58 and his father died at 64. All Huntington’s Disease.
Thank you for reaching out and sharing your and your husband's experience of living with the impacts of HD. We know the family will be touched that their experience has relevance to you. Please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/ or to our online peer forum. It is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/. We also have a Remembrance Service each year to honour those that we have lost and the contributions they have made to our lives. If you wish to include your husband in our Remembrance Honour Roll for next year, please email us at info@huntingtonsvic.org.au.
Praying for your family. I’m so sorry you have Huntingtons. Praying for a cure 🙏
Thank you on behalf of the family.
Honestly no family deserves to go through this , this disease is just so depressing just to see your loved one slowly losing their mind and can’t do normal things and the fact that they can’t even express their emotions on what’s even going on it just slowly takes over their brain without even knowing and all of a sudden they speak less and do less things and the fact seeing them suffer and cant even do anything but help feed them until it’s their time to go and the fact that this disease is hereditary makes their kids not even want to have kids because their afraid they will have it and passing it down to their kids and make them go through the same thing just passing it down generations which is to fucking depressing to deal with making them lose their minds killing their mental health having them paranoid thinking they have the disease until they get tested and find out but no one wants to find out that they have it or not it’s just to much to think about like what kind of fucking world do we live in my mom had HD at a way to fucking early age it was just way to fucking soon and the fact that I had to see her go through it at a very young age (10 years old) and my siblings which are older we had no idea what it was we didn’t think much of it because we were still kids but now that we are matured and grown up we realize that she was showing so much symptoms it was so sad because no one knew her family passed down HD and the fact that we went through that none of us want kids so they have to go through what we went through it’s just way to depressing to go through honestly I really do hope there is a cure for it no one deserves to go through this.
Adrian, I'm sorry for your family. I agree no family deserves to go through this.
Thank you for sharing your personal experience and we know the family will be pleased to know that their experience had relevance for you. You and your family have evidently had a really tough time and we are here for you if you need us. Please do not hesitate to make contact with us at huntingtonsvic.org.au/contact/ or via our peer forum. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
God bless all of you-I’m praying for you
Thank you on behalf of the family
My sister in law and her sister both tested negative ,I was so happy my nephews were safe. Sadly both my sister in law and her sister passed away last Sept. both were in their 50’s .
Thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We hope you and your family have the support you need, please reach out to us if you need any further support.
I looked after a lovely man with this disease,it is a devastating disease. Please I urge you to make a plan to communicate, when things got dire.It makes the person be a little less frustrated if you can understand them a little better .It’s the worst disease ,I think,because it runs in families , so so sorry for you and your family x x
Thank you for your support and advice. It is only through community members sharing common experiences that you are able to take control of a situation that appears to be chaotic at times. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
I would not have kids to pass this to.....I wouldn't take the chance
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Bless you and your family. Don’t understand. You are so brave.
So very sad. I volunteer at our local hospice, and Huntington’s is the worst disease I see. My heart goes out to all that suffer this horrid disease.
We want to take this opportunity to thank you for your service to those patients in the local hospice. Thank you for your support of this family, it is much appreciated
@@huntingtonsvictoria3391 Thankyou. So heartbreaking for all involved.
Going into a nursing home caused more deterioration. Psychological conditions lead to swift physical breakdown. Sad.
Thank you for your comments. Making decisions in relation to healthcare, supports required and accommodation needs is a complex and difficult one. We hope that you were able to receive the support that you needed at the time to transition your loved one into care. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/.
My amazing beautiful adventurous active 34 yr old brother in law was diagnosed with Huntington's 3 yrs ago. They have told him he probably won't live more than 10 years. He's got 2 small children. The children can't be tested for the gene until they are 18
Thank you for sharing your personal experience. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
@@huntingtonsvictoria3391 thank you
This is such a hellish and heartbreaking disease. I pray for an effective treatment and someday even a cure.
Denial is a terrible thing if you are then going on to have children and pass this on for another generation. So sad.
Thank you for empathising with this family's story. We know it will mean a great deal to them, particularly given how hard it is to share your personal experience with a public that is unknown to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Bless you all x
Thank you on behalf of the family
Such an awful disease 😔 I'm sorry for those who have it and or have family/friends who've had or have it.
Bless you all 🙏
Im sorry that it happened to your family.God bless
Thank you for your support on behalf of the family
My grandmother had Huntingtons disease. Two of her children had it but thank God my mother did not. Because of this we were all be able to have children without the fear.
Thank you for reaching out and sharing your experiences with HD. We know the family will be touched that their experience has relevance to you. We hope your family is receiving the support they need, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
My husband's father had huntingtons and so do his brothers but he refuses to be tested.
Thank you for reaching out to us. Making decisions in relation to healthcare, supports required and testing is a complex and difficult one. We hope that you and your family are receiving the support that you need. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
I pray for the Fergusons.
Thank you on behalf of the family for your support
There is a genetic disease in my family. It's one reason I didn't have children. By the time I was old enough I was done with it.
Thank you for sharing your personal experience, and we know the family will be pleased that their story had relevance for you. We hope that you are receiving the support that you need.
I had a friend he was my father's friend growing up Peter and his brother Patrick and sister had Huntington's disease
Thank you for sharing and please do not hesitate to reach out if you or your family require any assistance from us huntingtonsvic.org.au/contact/. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
What a brave family, indeed! The book written by Lisa Genova " Living with the O'Briens " is a beautiful book about a family confronted to this disease.
We agree, this is a wonderful, caring and resilient family who share their experiences in the hope of helping other families who are living with the impacts of HD. We also enjoyed reading the book "Living with the O'Briens"!
genetic testing before pregnancy
If you need further information in relation to PGD and IVF, please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/.
Horrible nasty disease. I've seen first hand what it does. I hope research gets a handle on a cure to end this suffering.
If you would like to access information in relation to current research initiatives, please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/.
But what about the three grandchildren we saw in the video, did they have it too? I hope they don't😔
Thank you for your interest and support of the family. Sharing their family story is their way to make a difference to those impacted by HD, regardless of their gene status.
Yes there is a grand daughter that wasn’t there that definitely has it. She also has 3 kids who probably have it too
great
But now with Testing it could be better, right?
There is no cure and no way of slowing it down. Not in my lifetime but i hope they find a cure at some point
Thank you for sharing your thoughts and hope for Huntington's Disease families. We are with the HD community each step of the way. HD Buzz is a great way to stay up to date with the latest news on research in the HD space en.hdbuzz.net/. Please do not hesitate to reach out if you have any questions.
A friends husband died of Huntingdon so did his parents but hard to watch because when I first met him when he was well
Thank you for sharing and please do not hesitate to reach out if you or your friend require any assistance from us huntingtonsvic.org.au/contact/. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
my daughter's dad has HD its so hard watching him
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
❤
My uncle and mum have their disease and I haven’t been tested and I don’t want to be
I don't blame you! I know I wouldn't get tested either!
Go live your life to the max!!! ✌️🤟
This disease and its impacts are complex and far reaching, therefore there is no right or wrong answer in relation to genetic testing. It is an individual decision. Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
❤😢❤😢❤
Thank you on behalf of the family for your support
Wish you the best despite of it.
Thank you on behalf of the family.
Woody Guthrie is most famous celebrity family eith Huntington s
😢
💔💔💔💔💔💔💔💔💔💔
Thank you for your support
I know this is sad ..and im sorry..but why keep reproducing?
Thank you for reaching out to us. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one, with many personal considerations. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
I guess I might think “birth control”…
So we decided to keep procreating. smh
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Yep. Very very selfish
Do the girls have huntingtons?
Such a selfish family. The girls knew they could pass it on and still had kids.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.