- Видео 181
- Просмотров 270 943
Huntington's Disease Association
Великобритания
Добавлен 15 июн 2021
The Huntington's Disease Association is a national charity that supports those affected by Huntington's disease across England and Wales. Huntington’s disease is a rare neurological disorder that affects the central nervous system and is caused by a faulty gene passed down through families. We aim to educate, support and raise awareness via this RUclips Channel.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
Huntington's Disease Youth Organization
The Huntington's Disease Youth Organization (HDYO) is an international organisation supporting, educating and empowering young people up to 35 years who are impacted by Huntington's disease. Their aim is to provide a safe place to support, educate and empower young people and their families.
The Huntington's Disease Alliance welcomes Jenna Heilman, Executive Director of HDYO, for this webinar to talk about what
HDYO is and what it does.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
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Once this video ends, RUclips will auto-play another video related to the cu...
The Huntington's Disease Alliance welcomes Jenna Heilman, Executive Director of HDYO, for this webinar to talk about what
HDYO is and what it does.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
•••••••••••••••••••••••••••••••••••••••••••••••••
Once this video ends, RUclips will auto-play another video related to the cu...
Просмотров: 52
Видео
A guide to making your Will | Huntington's disease
Просмотров 53Месяц назад
Find out more about Will writing and how these gifts can impact the future work of the charity. If you have been putting off making a Will, or meaning to do it for some time - you are not alone. This session will hopefully help you to get the ball rolling and feel more confident when making your decisions. The webinar is designed to give you an overview of what is involved in making a Will, and...
Our Creative Journey | Huntington's disease art exhibition interview
Просмотров 42Месяц назад
In a small town on the outskirts of the Cotswolds, the Paris Church kindly agreed to showcase the work of eight artists all of whom are affected by Huntington's disease. Parents of one of the artists, Charles and Phil spoke to the radio about the impact that art has had on their son, Spencer. In this moving interview, you will hear about how Spencer's life changed with the progression of his Hu...
World Mental Health Day | Liv's Story
Просмотров 972 месяца назад
This #WorldMentalHealthDay we asked our ambassadors and community why talking about their mental health is so important. Liv one of our ambassadors talks about accessing support and why she wants to talk about mental health.
Looking after oral hygiene | Huntington's disease
Просмотров 1723 месяца назад
Oral hygiene in the later stages of Huntington's disease is really important. Dental Therapist and Lecturer at Bangor University, Mari Morgan, hosts this webinar on oral hygiene. Mari will be talking us through an overview of good oral hygiene practices and the products that are available. We will also take a look at what the healthy oral cavity should look like and when you should seek further...
Supporting family communication with LOHA | Huntington's disease
Просмотров 823 месяца назад
LOHA Health is an organisation supporting parents to help their children manage their mental health through human and digital resources. Alison Metcalfe, Founding Director of LOHA, talks about a family therapy method they have developed to support parents and families. If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.or...
Understanding genetics | Huntington's disease
Просмотров 3125 месяцев назад
Understanding genetics | Huntington's disease
Caring for someone with Huntington's disease
Просмотров 3975 месяцев назад
Caring for someone with Huntington's disease
BBC Lifeline Appeal | Huntington's Disease Association
Просмотров 2,2 тыс.6 месяцев назад
BBC Lifeline Appeal | Huntington's Disease Association
Q&A with HDBuzz | Huntington's disease
Просмотров 5587 месяцев назад
Q&A with HDBuzz | Huntington's disease
Enroll-HD | Huntington's disease research
Просмотров 2007 месяцев назад
Enroll-HD | Huntington's disease research
St Andrew's Healthcare | Huntington's disease awareness month
Просмотров 1697 месяцев назад
St Andrew's Healthcare | Huntington's disease awareness month
A reminder from Alison Steadman to watch the Huntington's disease BBC Lifeline appeal
Просмотров 1487 месяцев назад
A reminder from Alison Steadman to watch the Huntington's disease BBC Lifeline appeal
Alison Steadman | Huntington's disease BBC Lifeline
Просмотров 1,3 тыс.8 месяцев назад
Alison Steadman | Huntington's disease BBC Lifeline
You are not alone | Huntington's disease youth engagement service
Просмотров 2,2 тыс.9 месяцев назад
You are not alone | Huntington's disease youth engagement service
Gastrostomy tube (PEG feeding) | Huntington's disease
Просмотров 3319 месяцев назад
Gastrostomy tube (PEG feeding) | Huntington's disease
🧦 Get involved in Odds And Socks Day! 🧦 February 29 2024
Просмотров 9010 месяцев назад
🧦 Get involved in Odds And Socks Day! 🧦 February 29 2024
How can Huntington's Disease Association help you
Просмотров 33510 месяцев назад
How can Huntington's Disease Association help you
Hobbies and Huntington's | Joe and football
Просмотров 19711 месяцев назад
Hobbies and Huntington's | Joe and football
Physical activity and exercise | Huntington's disease
Просмотров 57011 месяцев назад
Physical activity and exercise | Huntington's disease
Youth Engagement Service | Huntington's disease
Просмотров 188Год назад
Youth Engagement Service | Huntington's disease
Sarah Gunn | Huntington's disease psychological strategies
Просмотров 391Год назад
Sarah Gunn | Huntington's disease psychological strategies
Ed Wild research updates | Huntington's disease
Просмотров 1,6 тыс.Год назад
Ed Wild research updates | Huntington's disease
A clinical psychologist answers questions about mental health | Huntington's disease
Просмотров 203Год назад
A clinical psychologist answers questions about mental health | Huntington's disease
Charlotte Conn | A personal perspective of Huntington's disease
Просмотров 768Год назад
Charlotte Conn | A personal perspective of Huntington's disease
Dr Akshay | Mental health in Huntington's disease
Просмотров 677Год назад
Dr Akshay | Mental health in Huntington's disease
Quality Assured | Care home accreditation
Просмотров 167Год назад
Quality Assured | Care home accreditation
Continuing health care | Huntington's disease webinar
Просмотров 537Год назад
Continuing health care | Huntington's disease webinar
A very odd video with good information
I am so sorry, I have children with HD....and it literally takes my life away.
Beautiful video Alison, as tough as this would be for you. You do amazingly and so beautiful to spend this time with your family. My Dad had HD and I love your advice to live as well as you can for as long as you can ❤ thank you
Her son is so adorable. I am glad she was negative
Im going to get involved I’m just beeing diagnosed
I’ve taken care of many clients with this disease. From the first stages and until the end. It’s incredibly heartbreaking.
#huntingtonsdisease
You are an absolute treasure Alison. Your family is so lucky to have you when fate has dealt you all such a terrible hand.❤❤
great explanation
If I had people in my family with this condition, I would never get tested. I think, in this case, doubt is better than certainty.
@@klausneumann3375 I would want to know how I am fighting to prepare for the fight instead of being a wimp like you
I’m fighting her Huntington and I have faith in all you that are doing the same
Keep your heart whole guys….same things going on here
Where is your blog, please?
Hi there, this is Kemi's blog: hdaleapyear2024.blogspot.com/
I'm studying personal care course at the moment and we watched videos today on this
If I ever get into this I'll end up my life
I had to watch this video to understand the disease since I am studying psychology. Well, I cried the whole time watching this video! You are Becki Brave and I am sending you all my love to you 🥰🥰🥰
Thanks for sharing
If there is no cure, who is the specialist you are refferred to?
There are many Huntington's disease specialists who look after multidisciplinary teams including occupational therapists, speech and language, physios etc who can all help people with Huntington's to live a better life and help with symptom management. There are specialist clinics across England and Wales and the Huntington's Disease Association can also help with signposting to these services.
Stay healthy,stay positive,find the things in life you love and never let go
God bless this sweet intelligent beautiful lady. Protect her at all cost!❤❤
Thank you for this!
Bless her I'm being diagnosed for something could be HD or MS.
Praying for you, Becki. Jesus loves you and is holding you in the palm of His hands.
The best course of action is always to live life as best you can. You and your family are doing that. Take care. Love.
If the father is older, why is the daughter symptomatic so early? Is true that cats increase from father to child?
Father's tend to have children earlier with HD
her blue eyes are mesmerizing.
ميگن علم پیشرفت کرده کو اخه یه بیماری هانتینگتون درمان قطعی نداره همتون با رشوه دکتر شدين لعنت به این دنیا
Hello Katie, greetings from Northern California. Thank you for sharing this informative video. Take good care of yourself. Stay safe out there. 😊
Hello I have HD I tested positive at age 50 are 2 child ten tested negative for HD our daughter is expecting a baby in September X
Imagine having only 4 hrs a week to yourself.. !! That's about all you get.
Yes that's very true, it's a battle as doctor usually have had no prior experience with hd. You have to work it out for yourself.. 😢 It's 24 7 care.
I am a caregiver for 2people with Huntington disease,one is Autistic and the other just the Huntington,at times it becomes over whelming.when they are irritated.but I have been with them for 7yrs now.at times I want to leave.but they really need me when I think about them.God keeps my mind.
😢
Thank you, this was very interesting and informative. Although we have HD in our family Dr Lihari explained aspects of HD that previously I had not fully understood. It is very encouraging to see how much research and trials are ongoing. Like every family affected by HD we are in constant hope of a breakthrough that will stop HD in its tracks. Thank you for the work you are doing to help families affected by HD. ❤
You look just like your mother! God bless ❤
Praying for you Alison God bless you abundantly
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
@@orbitingdecay6797 Correct, new mutations (sometimes referred to as "de novo" mutations) can occur, where a child develops the disease without having inherited it from either parent. However, these cases are VERY VERY unusual and represent less than 1% of all Huntington's disease cases.
❤️🙏🙏 I can't imagine ! God Bless you!
🙏🏻
I hope you have the support you need I nursed my Dad through Alzheimers and my mum just six months after my Dad passed with terminal cancer. There are 4 of us kids but I was the main one funny really 2 had early retirements but I was working and providing care with careers I was exhausted and in the 6mnth period lost 3 stone I was little anyway so i looked terrible When my mum died I was ashamed If felt peace You should never be soul carer you stop being you Im so sorry this happened to your family My sister now has breast cancer and im waiting to see if I have it too strange coincidence If I do but I won't let loved ones take the strain I will go to hospice if that time comes don't lose sight of yourself your a wife and a mum first. x
I looked it up it's something about the brain
Oh I looked it up it's something about the brain
Retired immunologist with a friend with HD. Are you aware of any trials (or anecdotes) of diets or antioxidant therapy that may slow progression of the disease? I am particularly interested in ketosis and ketogenic diets used for epilepsy and whether it may apply to other neurological diseases.
Hi there, we would recommend watching the video below, it is a Q&A with HD Buzz (a reputable source for Huntington's disease research news) and the do touch on diet in this video: ruclips.net/video/iEmA8FkM010/видео.html Also, it would be worth getting them signed up to Enroll-HD (you can find more about this in the below video): ruclips.net/video/ncsplp9uTeo/видео.html They are a clinical research platform and the world largest studies and is a resource for both people with Huntington's and professionals. They have links to all trials as well.
May God help you find the cure!
Really good advice, thanks.
Becki, you are very strong and very brave. I wish all the good in the world on you.
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Thank you for sharing your story!💜
I’m currently my husband’s caregiver because of Huntington’s. It’s tough, but I want him to be as safe, happy, and healthy as possible for as long as possible. It’s a horrific disease.
🙏🙏🙏❤️. I love your perspective and serene energy.