Emma talks about the impact of HD on her family, how she copes and her feelings about being at risk. Part of the HDA & HDYO's 'Young People' interview series
A very frank and raw interview Emma all these interviews show what a terrible effect HD has on families, as well as the strength and courage these inspiring teens have. Such a brilliant series of interviews.
Emma, try not to feel guilty. Being a caregiver is so exhausting especially dealing with such a horrible disease. You were so young to have such a responsibility. I would recommend you and your brother see a grief counselor if you haven’t already. Take care of yourself. You and your brother sound like very outstanding children. Good job for taking care of your mother.
I'd want to know so I could make certain decisions before the illness took over and rendered me incapable. Not everyone who has it dies so quickly, is able to communicate, go out and shop even for unnecessary items towards the end like that. A person generally follows a similar course as other family members but not always. I'd definitely want to make plans to make the most of whatever remaining good years I likely had left. I'd also want time to help brace and prepare my loved ones for the eventuality. Plus if negative then I could relax, breathe a sigh of relief and not spend the next several years or more needlessly dreading, worrying, feeling sad about the possibility - whatever, all for absolutely no reason.
She has plenty of time to plan as this disease has a slow onset. She will have symptoms occur progressively and then get tested. The process of dying from this disease takes years. Six years, as her mother had, was a quick progression but having it only six years is merciful. If it was me I woiuld not get tested unless the anxiety of not knowing became too stressful. I would get tested if I wanted to have children but there is even a way to have children without Huntingtons without being informed yourself if you have it.
Thank you Emma you have been very brave. To the last comment (luchth) I hope you will ignore this. I feel very sorry for this person but it is Another reason why I do not want to be tested myself.
It will be better to get tested although it must be frightening,but at least you will be able to move forward with your life. What a horrible,horrible disease.
I don't quite understand the timeline. Was her mom totally debilitated? It sounds like she was on her own for some time and functioning well. You will still worry constantly whether you get tested or not. I debated having gene testing because my mom and both sisters had breast cancer as well as my mother's sister. I did it and am not sorry. I realize this is different than ALS, but it can be and usually is fatal.
As a species we are only designed to live til child bearing age to provide off spring and nothing more. Anything beyond Menopause is really icing on the cake. Don't really serve a purpose afterwards. This is one of the ethical issues of Hunnington's.
what a mature and lovely young woman. thank you Emma for sharing your story. I wish you and your brother the very best.
This comment is 11 years on, I hope this amazing young lady is doing great and is healthy .
A very frank and raw interview Emma all these interviews show what a terrible effect HD has on families, as well as the strength and courage these inspiring teens have. Such a brilliant series of interviews.
Thank you :)
This is a wonderful video, thanks SO much for sharing it. You have a family with those of us affected by Huntington's Disease.
Hi my mum has it and so do I really great video know what you have been through
Emma, try not to feel guilty. Being a caregiver is so exhausting especially dealing with such a horrible disease. You were so young to have such a responsibility. I would recommend you and your brother see a grief counselor if you haven’t already. Take care of yourself. You and your brother sound like very outstanding children. Good job for taking care of your mother.
I'd want to know so I could make certain decisions before the illness took over and rendered me incapable. Not everyone who has it dies so quickly, is able to communicate, go out and shop even for unnecessary items towards the end like that. A person generally follows a similar course as other family members but not always. I'd definitely want to make plans to make the most of whatever remaining good years I likely had left. I'd also want time to help brace and prepare my loved ones for the eventuality. Plus if negative then I could relax, breathe a sigh of relief and not spend the next several years or more needlessly dreading, worrying, feeling sad about the possibility - whatever, all for absolutely no reason.
She has plenty of time to plan as this disease has a slow onset. She will have symptoms occur progressively and then get tested. The process of dying from this disease takes years. Six years, as her mother had, was a quick progression but having it only six years is merciful. If it was me I woiuld not get tested unless the anxiety of not knowing became too stressful. I would get tested if I wanted to have children but there is even a way to have children without Huntingtons without being informed yourself if you have it.
Thank you Emma you have been very brave.
To the last comment (luchth) I hope you will ignore this.
I feel very sorry for this person but it is Another reason why I do not want to be tested myself.
wow...my mom was adopted too...and i have HD
It will be better to get tested although it must be frightening,but at least you will be able to move forward with your life. What a horrible,horrible disease.
I don't quite understand the timeline. Was her mom totally debilitated? It sounds like she was on her own for some time and functioning well. You will still worry constantly whether you get tested or not. I debated having gene testing because my mom and both sisters had breast cancer as well as my mother's sister. I did it and am not sorry. I realize this is different than ALS, but it can be and usually is fatal.
Wonder how she is doing now this was ten years ago. Hope she is free of it.
As a species we are only designed to live til child bearing age to provide off spring and nothing more. Anything beyond Menopause is really icing on the cake. Don't really serve a purpose afterwards. This is one of the ethical issues of Hunnington's.
Everyone who can’t have children should be immediately eliminated! 👍
That's not true
What would Jesus do?
He would have cured it.
Keep frolicking with the other twelve? 🙂
I recommend Dr Oje Abacha on his UA-cam channel for getting rid of my Huntington disease.