Becki's story | Huntington's disease
Вставка
- Опубліковано 25 вер 2024
- In this video Becki bravely shares her story, from being homeless after her Huntington's diagnosis to now being in a supportive care home thanks to the hard work and dedication of Anita Daly, our Merseyside Specialist Huntington's Disease Adviser.
Our Specialist Advisers advocate on behalf of their service users to ensure they get the care that they need. As a support charity, we raise funds in order to provide this invaluable service to people impacted by Huntington's disease and their families.
You can find out more about our advisory service below:
www.hda.org.uk...
•••••••••••••••••••••••••••••••••••••••••••••••••
Once this video ends, UA-cam will auto-play another video related to the current topic you are watching. If you are not comfortable with this and are worried that UA-cam will suggest a video you don’t want to see, use the scroll bar at the bottom left of the video (desktop) or top right of the video (mobile) to switch auto-play off.
Please note that every Huntington’s disease experience or journey can be different and not all information shared by the Huntington’s Disease Association will be relevant to all. Please discuss with your GP before undertaking any exercises or medical advice given in our videos.
#HuntingtonsDisease
I find these stories devestating. My dad died when i was 9 and my mom was put in a nursing home because she had HD. Then from 2014 - 2017 I lost 4 sisters to HD and my nephew who took his own life by jumping off a building cos he was in the early stages of HD. I was tested around 2002 and tested negative. All my love and respect goes to this very brave and beautiful soul for telling her story
It's an absolute miracle you tested negative. Please make the most of your life :)
@@syrus3k Its literally a 50% chance and hes lost 4 siblings to the disease, where is the miracle here? I know ur trying to be nice and im not trying to be rude but if im him i would be offended by someone calling it a "miracle".
It's 50/50 @@syrus3k
It's broken my heart to see Huntington's Disease sufferers, not just through this horrendous disease and how it affects them, but how cruel people can be to someone like Becki. I hope she gets all the support she needs and more funding is put into raising awareness and finding a cure x
Total respect to you. I was adopted out and my Birth Mother had HD. I found out about HD by accident. I got the result before Christmas and was clear. You are a strong person and there is nothing but admiration for you and your family 👊
This is so heartbreaking, there needs to be a cure for this it breaks families, she's so incredibly strong to talk about what she's going through. Happy that she seems to have amazing support now and has got help to get away from the street, no one with Huntingtons should fight all alone.
Ironically there appears to be a cure using CRISPR. But genetic “ethicists” - I call them “gatekeepers” as most people in the medical profession are - are trying to stop germ-line gene editing. But Huntington’s could be eliminated from the human population although as of 2023 it would be very expensive. I would imagine the cost will really come down over time.
I don’t think any genetic disease has ever or will over be cured. All the science research and money that have poured into AlS and people still have the same lifespans as Lou gerig
The cure is if you carry the Huntington gene don't have children. Simple as that.
Becki, you are very strong and very brave. I wish all the good in the world on you.
Your account of your Huntington's is very touching , so happy to hear that Anita Daily stuck by you . Becki , you are a brave woman , I wish only the best for you facing this terrible disease .
A year on, it can only be so much worse. Audience wishes her all the best. Cheers!
I’m so so sorry you have to go through this. My mom and sister died from Huntington’s. My other sister is showing signs. My heart breaks for you🙏🏼🙏🏼🙏🏼❤️
God bless you for sharing that information of your family, and of your understanding of
this cruel disease. I do hope you've got someone who's can support you?
@@carolpainter4305I do. Thank you for caring 💕🙏🏼
I’m sorry to hear that 😕 my dad died on my one year anniversary this year and I show signs myself I’m 22 but I’m so scared man 😔
Just lost my sister in law aged 43yrs.
RIP sweetie.
I'm so sorry for your loss, it must have been very difficult for you. Thank you for sharing. It's important that we all have some understanding of this cruel disease.
God bless you
I’m so sorry.
What a brave and selfless woman, to take the time to explain her journey, i really hope treatment comes in time for her and all the other people suffering this horrible disease
Hi I have Huntington's disease to CAG 56....I'm 42 and live the same thing❤
My God--how heartbreaking. I have neurological issues but after watching this, I’m never going to complain about anything ever again. Blessings to her as she needs them, when she needs them.
True. I have some neurological issues as well but after I watched "the Huntington dance" full length documentary on UA-cam ... I'll never complain again.
A sweet and brave woman. I know about this horrific disease. Good thing is she will be completely cared for till the end. So sad!
Dear Becki, your are so strong and beautiful. May gods healing ❤️🩹 hands comfort you. I pray they find a cure for this devastating disease. Praying for you sweetie, 🙏🏻 you deserve to be well, healthy and happy!! ❤️🙏🏻❤️🙏🏻❤️🙏🏻
You are a beautiful and brave person. Thank you for sharing your story with us.
I have this hell disease too and your video gave me hope. Thank you
Wishing you the best in your journey
How does it start?
May god be with you Becki and I’m sorry for everything you’ve been through.
Amazing becki.. I hope your son does well and that you continue to be so brilliant for many years x you are quite amazing
Hello,my friend
Nice to meet you
Warm Hugs and best wishes from Amman Jordan 🇯🇴 The Middle East
Thanks for sharing
Thank you Becky for sharing your story. Inherited genetic disorders at times can be very difficult to explain to people, sometimes it can be even more difficult to understand it for those who are affected by genetic disorders.
I don't have Huntingtons disease Becky but I was involved with some drug trials with my genetic disorder. I have two beautiful sons and I unfortunately passed my faulty Gene to my youngest son, which almost destroyed me when we were diagnosed. My marriage ended as my Husband blamed me so I do have a little bite of understanding, of what it's like to be rejected because of something you have no control over.
Your a beautiful strong young lady im just so sorry that you've had to go through so much, but to have your special friend by your side just ģives me comfort to know you're safe.
Sending you a gigantic Hug filled with love and respect from my heart ❤ to your ❤ heart
I'm so sorry to hear this
Poor baby. Oh honey. Make the most of those 15 years!
Becki, I pray for you and your family.
So happy you have found a lovely place and that you have Anita. Good on you for sharing with others. You are so special and so beautiful. Lana Spencer
Prayers and love to you Becki. I can't imagine what you went through getting that diagnosis and then your partner throwing you out. That's terrible and no one deserves to be treated that way. I'm so very glad you are with people who care for you. God bless you....
God bless this beautiful lady, God bless her family and of course.. God bless Anita. 😭🙏🏻💘
Thanks for sharing your story Becki 🙏🏼
My heart is with you.
I’m only 17 and having symptoms and I’ll test when I’m 18. No one knows yet my grandpa has it and my aunt but not sure about father
What symptoms. I'm 35 with no known family history but I feel strange.
@@trmp9923 memory fog, needing an excess amount of sleep, having small body spasms and feel rigid - kind of like symptoms found in people with rigidity, mood swings maybe? Not sure how to explain it but almost every other day I’ll feel like shit for no reason. This has been happening and more noticeable (to me haven’t said shit to no one) for years now.
@@bothrealting2598 I have these same things but no family history. Could be nothing also.
@@bothrealting2598Most of that sounds like being a normal teenager. Certainly not worth worrying about now.
I have these too but many more than that
How is Becki doing now? Thanks
Our sympathy pours out to you Beckie, brave lass doing this vidio, it’s going to help many people in different i ways. Thank you to those support workers that help these poor souls and their extended families. God Bless you all .
My mom has it. I havent been tested
I have a 50% chance of having this disease. I am so scared of what's coming
Bless you for sharing with us Becki…. I want to pray for you. 🙏
Thank you for sharing your story Becki very inspirational and educational.xx
lots of love ❤️ from Maryland
Becki gutted for you and so admire you for who you are, a courageous gal who lives life and has made so much of each day . God bless each day you are here to share your love and story for us all to learn aboùt HD. Keep well and as strong xx
Prayers sweet lady.
You are truly amazing, so glad you have such good support ❤
I'm so sorry you're going through this.
Thank you for sharing I am glad you found a home I have several people I know with Huntington’s I am learning about the disease . ♥️
You're amazing God bless
Thank you so very much for sharing the story. My Mother also got died because of this,in a very bad condition. I think, from past few days,I am getting some symptoms.
My mother's brother,also has the same disease. I don't know what is going to be happy.
I’ve never heard of this. Thank you for sharing your story
Thank you for sharing! I appreciate your courage more than you may ever know. ❤
Praysrs for answers more happy. Thanks sharing your discovery. Each has a struggle , some harder than others.
Thank you for sharing your story!💜
Well told. and Thank You Anita!
❤️🙏🙏 I can't imagine ! God Bless you!
Bless her I'm being diagnosed for something could be HD or MS.
I was a carer to HD clients for many years. It's one of the worst diseases to be diagnosed with. So many sad stories and it's really important to talk about it so decisions can be made. One of those decisions is to not have children and pass it on, that's the cure.
Hello
Our purpose is to educate as many people as we can about the disease and it's misconceptions. Most people have already had children before they find out that they carry the disease. We also educate those who are positive or at risk and may not want to find out, how they can start a family without the risk of passing the faulty gene on.
It's not a cure it can start randomly
Becki is truly a special brave young lady, Im a retired nurse in the U.S. I took care of a young women in her late 20s in a long term care facility. She had 3 children who came to visit her 2 boys, one girl. In order to take the blood test called The Answer, they had to be of a certain age, I think it was 18, and take Psychological test of sorts. long story short Janice died and all of her children tested positive. This a horrible disease for which there is no cure.
That is truly heartbreaking, so cruel is this disease.
Thank you for being that special person to care for that Lady who was your patient, who was someone's mother and someone daughter.
God bless all of those who take care, of those in need because it takes a very special person to care for someone very special.
My God, how truly devastating. Thank you for sharing.
This is why genetic testing before having kids is so important. I’m not saying this lady could have prevented her situation and her kid’s but now we have the ability to find these things out and avoid such horrible outcomes.
God bless you. My ex has it and I pray a lot for her
You left her...
@@orbitingdecay6797 no it was found out 15 years later. I took care of her father with it and it’s a horrible disease
Hope you get the luck you need 🍀!
You are such a brave woman. I hope through science there will be a cure or at least better treatments. Hugs.
This is so sad 😔,some ppl go through so much hardship 😪🇿🇦
My uncle was adopted d. He was the same age as me. We grew up together and went to school together. He was adopted d because his mum had Huntington's but I only realised after I put the facts together ( I was a. Psychiatric nurse by this time). He tested positive and couldn't cope. He became an alcoholic,, really hiy rock bottom. He died a few years ago aged 54
Praying for you, Becki. Jesus loves you and is holding you in the palm of His hands.
I had really bad unintentional movements from a drug reaction before. I know how aggravating something like that can be. My heart goes out to people with this
You are so brave. Do not let the disease control who u are. Fight harder each day I'm so sorry that you have this dear God bless her!
her blue eyes are mesmerizing.
Have nursed 2 people with it, one of the worst diseases 😢💔
I hope you find a cure ❤❤❤.
I am cheering for you❤️
I’m reading “Codebreaker” right now. Parts of the book I really like and parts I loathe. If you’ve dealt with anyone in the medical profession and you read it you’ll probably like them even less as you read. But Becki should look at CRISPR. I don’t know if both a somatic and germ-line edits exist, maybe only for offspring perhaps. Right now I’m reading a section on fixing Huntington’s and it actually could be theoretically eliminated from the human population although I’m guessing medical insurance companies don’t like that idea.
❤️
I once worked with a woman while she was still in the early stages of HD. Her father was thought to have Alzheimer's until she got HER HD diagnosis. She never had any children of her own, although for other reasons, so no fears of passing it on, and died a few years ago.
I don't know if her father knew anything about his own ancestry. He might have been adopted, or his biological father was not who everyone thought he was, or the affected relative might have died from something else before they developed HD symptoms.
You are amazing
Why don’t people adopt instead of passing on this terrible disease!
My mum wasn't diagnosed until into her 60's. My wife and myself were expecting out third child when we heard, and my brother already had a son when we found out what Huntington' Disease was!
People have children way before symptoms and diagnoses that's why! And the fact not much people know about this disease. It's rare.
What a stupid comment for you to make
True. I found out my husband’s sister has it and she got diagnosed at 72! There were others in his family but no one talked about it till now. Now my husband, daughter and granddaughters are at risk.. sigh… I have it my family also and I also found out when my daughter was 10. Not sure if my dad had it as he died at 55 but had no symptoms. Only my aunt,grandma and cousin had it. No else has it.
🙏❤️
Becki, do you know what Quetipine Fumarate is?
❤❤❤
❤❤
Not as rare as you think, I lost a really close friend to this disease
"Rare" is used here in medical terms. It's actually a fractional medical term for diseases affecting less than 1% of population. HD affects .004%.
No it's rare 10-12 in 100,000
😘❤️🙏
Look to Jesus, sweet heart. He has you in the palm of His hands.
I asked Jesus to cure my sister of HD, and it didn't happen.
what would Jesus do? What did He instruct us to do?
🤍🤍🤍
I found a treatment as I have a young man who I visit because he has been like a brother to my sons since his mother was diagnosed with HD 30 years ago and now he is quite bad himself and in care. The trouble is that although I got a copy of a mouse's brain free almost except one black spot of the tangles of protein, they have taken it off the net. Does anyone want to try cat's claw a rain forest bark as it seemed to help but they just suggested it might help with Alzheimer's and of course the drug companies want to make it into a drug to justify the high charges. God always provides a solution in the flowers of the field as it says in the bible. The patient has rejected it perhaps because his mind is already affected according to the medical people and I can't force him to try it.