This Test Will Reveal My Future ¦ BBC Stories
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- Опубликовано: 31 янв 2020
- Eighteen years ago, Danielle's mum, Lisa, started having aggressive outbursts, stumbling a lot and feeling anxious. She's now in the late stages of Huntington's disease and requires full-time care.
Huntington's disease is caused by a faulty gene that causes parts of the brain to become damaged over time.
Because her mum has the disease, Danielle and her sister, Sophie, each have a 50% chance of developing the condition.
Lisa didn't know there was a history of Huntington's disease in her family until she started experiencing symptoms. But if you do know there's Huntington's in your family, you can have a test from the age of 18 to see if you'll also get it.
Sophie said no to the test. But Danielle wants to know.
#huntingtonsdisease #genetic #test
If you are affected by anything in this film, you can get advice and information on Huntington's disease: www.nhs.uk/conditions/hunting...
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I think she made the right choice to find out before having children of her own. It will also give her clarity to make the most of every day that she has her good health. I wish the best for her and her family.
My son’s father passed away from HD in 2018. I hadn’t been with him in 21 years so when I learned of his disease, I was absolutely terrified and still am that my son may inherit this awful disease. My son is 25 now, and told me yesterday that he has moments where his hands shake uncontrollably….nothing too often, just sporadically. He never knew his father, but he’s inherited so much from him thus far. Can you all say a prayer for my son PLEASE??? His name is David, and he’s an awesome young man. I can’t imagine this ever being his life.
I’m praying for your son David. Father, please meet him at his point of need and give him supernatural healing. Please remove any defective genes in his DNA. Please come into his life and make your glory and riches his inheritance, not this horrible disease. I pray over his life and health. By Your stripes he is healed. In Jesus’ Name. Amen.
@@misskay8131 Thank you so much!!!
Please, please encourage him to get tested now.
@@fernemcallister6774 I’m afraid for him to discover that he’ll have this disease. I think he’ll stop living at that point, long before the disease causes him to. If it’s going to be, we’ll deal with it at that time. He’s a police officer now, and I want him to have a clear mind.
@@livinglifeafterlife6813 He would feel terrible if he impregnates someone. Not fair to her or to any unborn children. It’s crucial for him to take the test and allow himself to start living. Right now you’re both living in fear and that is terribly stressful. Better to know and to either free from fear or to confirm and plan accordingly. Others have dealt with this and he can as well. It’s possible he has sporadic handshaking from something else. Be brave, go through this with him. He deserves to know.
My question? If you know there is a chance then why would someone have children? My daughter Mariah (28) who I love with all of my heart has been diagnosed with HD...my wife passed away at the age of 47 and she and her family lied to me about this disease (I never knew) .it seems I had no choice in the decision...but the lasting effects has been horrible. It is this simple and please do not take this the wrong way....Stop having children if HD is in the family and the disease STOPS..... I have mentally broken down for 20 years with my family.... and I have no idea how to handle this....I loved my wife, I am just hurt......PLEASE GET TESTED BEFORE YOU HAVE A CHILD, SO THE PARENTS DO NOT HAVE TO WATCH THEIR BABY DIE" Amen
The end of this just ripped my heart out.
Very brave woman. Heartbroken for her and her family, it is a horrible disease.
I'm so sorry she tested positive. I do believe that anyone who carries this should NOT have children, I really don't, it's such a horrific disease. Adopt, but don't pass this on, so I admire her for getting tested.
You do know that people can have ivf, the embryos are tested and so anybody at risk or with a positive result can have a child free of it. I am at risk and want to be tested, but never had children. My sibling had 3 without any ivf, they were only 20 when their first was born and wasn't planned so they didn't even think of the risk. Our mother was fine then and nobody was aware it was in the family until my mother's sibling was diagnosed. My cousin had her son via ivf so thankfully he will never have it.
My two sisters and I had our test for the Huntington's gene. We were fortunately clear. A fourth sister decided not to. But now she is in her sixties, we assume she is also clear. For my two brothers, one was positive. We remember so vividly, at Guy's Hospital, having our bloods taken, then waiting those awful three weeks before returning to hear the results. For myself, I had to know. I didn't wish to live with the spectre of HD hanging over me. Never knowing if I could plan a future. I was thirty five when I had the test. In the prime of my life. I hated the 'not knowing'. Every time I stumbled or lost my balance I wondered. So it was worth getting the result. If positive, I would have adjusted to it, been the best I could be. My brother is now 59. He is being cared for in a lovely place, where he receives love, care and dedication from his carers. He is happy.
Really?
So sad 😞
bless her heart and the whole family very brave to share this with the world and thanks xx
my friend lost his beautiful wife to this cruel disease. God bless you for giving your mom the best life she could have.
You mom was lucky to have you as kids bc you're taking a good care of her. I wish you get well and have your own kids that will take care of you in health and sickness
I think watching this video has been helpful because although I'd heard of the condition I had no idea how it effected an individual and their family. It makes me more understanding. What a loving family. So caring and supportive. Maybe in years to come a cure will be available. The medical field is always progressing.
well said
I agree. I work with a seven year old that has Huntington's, and it is heartbreaking.
This has been so well edited together, their stories are really captured and told fantastically on a difficult topic.
This mother seems far better off than others that I’ve seen. This woman doesn’t violently thrash around like most HD patients do.
I noticed that as well. Im curious what treatment may have helped with those symptoms. It can improve quality of life to have a bit more control
You are right and the fact she had been living with it for 18 years, could still be out in a wheelchair, laugh at a joke and eat is astounding. My mother died from it after 13 years, was bedbound, couldn't be in a wheelchair for a year before that, had to have thickners and pureed food and choking. The chorea movements are worse at the start and middle, but later stages my mother and her sibling, who sadly also had it, couldn't thrash about and my mother's hands/wrists seized up. The repeats of the CAG count also mean the higher it is of 35 plus shows how much worse you will have it. I want to be tested now, started the process a decade ago, but wasn't ready then.
I don't know what I'd do knowing that could happen to me.... I pray for her and her family. I hope Danielle can lead a full and hopeful life!
Thank you, Danielle for taking us on your journey. I would have done the same thing. No matter what, live your fullest life.
I thank them from the bottom of my heart, because parents are our lives because of them. We in this world are tired of them for our sake. Parents must be respected and appreciated
@@magreetendason4223
Stop spamming cr@p.
Its genetic on my mom's side of the family. I tested negative thank god. Although I was happy at my results are negative, my mind turned to the people that test positive.
When seeing the video, I was hoping that you wouldn't have it. That luck will favour you. Very sorry to hear the outcome of the tests. Hope in the next years, they will find a cure. So brave of you to share your story.
Very brave to share her story. I hope there is progress in treatment in the near future.
Beautiful daughters. What a gift for mother.
The anxiety associated with wondering for the rest of my life is what I couldn't cope with. I'd rather know, one way or the other, because knowledge is power. It lets you make more informed choices as you live your life. Praying for the very best course for you.
No way, I would rather live with the unknown. There's no point in knowing if there's nothing you can do about it, just enjoy life and don't think about what tomorrow might bring. Come on, let's face it, we only live once and our life could end today for all we know, life doesn't even offer us any garantee that we're even going to live long enough to show symptoms, so why test.
Always see the glass half full.
Im so sorry Danielle and everyone else who has this monstrous disease in their family.
Everday there are new advancements in medical treatments, so I pray that one comes along before she needs it.
Wiped out half of the family on my fathers side, he got tested years back and did not have the defect. The old codger lived until a good age.
However, most of my Aunties and Uncles were/are being lost to it, Cousins of similar age to me now suffering from it, no doubt some of their children will too. I lived with it hanging over my head until around 25 or so (early to mid-1990s?) as there was no test before then, the defect was barely something known about in general. Our family was one of the early ones for the trials of the test, the researchers even traced the family tree.
As a teenager I was seeing in my relatives how I was possibly going to end up dying, but I also thought I was more likely to die from nuclear war before that. Next prospect is Cancer! What fun!
I would want to know, esp if I was planning to have children.
I would want to know. Because if I was carrying a gene that could mean any children I might consider having. Could also sadly inherit the debilitating illness. I'd have to make the decision to not have any biological children. In case they inherited this dreadful illness. I'd probably just foster until my health declined. I wish this family well.
@@taylorscott7402 I'm very sceptical about these "miracle cures" I think people should view James Randi's views on You Tube. About these kind of claims. This just sounds like a sales pitch to me.
You can have ivf and embryos are tested for the gene, so only an embryo which tests negative for HD is implanted. My cousin did this and she has a son who will never inherit it thankfully. I am at risk, going to be tested, but never had kids nor wanted to go through ivf anyway. My siibling had 3 though at a young age and our family only found out we were at risk when our aunt developed it. My mother never tested, but the onset for her was late 50s and she denied it despite seeing specialists.
What is the point of putting music over the voices at that level? That’s insane.
Her mom doesnt seem to have a lot of the chorea (movement). I wonder what treatment she was taking...seems like it was helping.
SPOILER ALERT: Do not read this comment if you do not want to know the results of the test before watching the video...
The last part with the day she got her results had me on the edge of my seat... My heart sank when it said that she tested positive. I do not have Huntington's nor do I have anyone in my family who does, but this is just so touching. Hopefully, one day we will have a cure, or at least an effective way to manage this horrific disease...
I think I'd want to know. For one thing, it would affect how I planned my long term life (how much savings do I need, where I live). But it would also be a good motivator for me to be present in every moment and really live my best life, not assume I had sixty more years to do all the things I want. also I think the therapy is so crucial beforehand, to help you figure out what your emotions are and to talk it out all the way, try and find a path of acceptance if the results do come back positive.
They say ignorance is bliss and I tend to agree with that. There's no point in knowing if there's nothing you can do about it. It's better to just enjoy life and not think about it, you don't even know how long you're gonna live anyway.
If I were in that situation, I would rather not know if I have the defective allele.
All my life I have no regrets. I enjoy it. I suffer. But that's a part of life. If you don't suffer, you don't know what joy is."
What’s her full name? How is she doing now?
Scrodinger’s cat
Don't take it the wrong way but as soon as I have proper health issues where your family has to care for you full time and you can't do anything for yourself, I'd want to end it there. Where's the enjoyment in life to not be able to do anything for yourself and taking valuable years from your own children to look after you, and theres no saying if you will even understand what's going on and appreciate what your family is giving up for you.
Matt V that’s what people say while they’re healthy. It’s another story when the situation happens.
Absolutely understand the sentiment and would say I'd go that route as well when necessary. But its hard to say what joy and fulfillment looks in certain situations. The small things count more and maybe that's just enough for some.
@@becomepostal Id make sure that it happens without any choice. What's the point in living if it's not really a happy life anymore. And would want my children to get on with their own life without having to look after me. My death would only be delayed if I didn't chose when to go, but they would still grieve. Just like funerals, I'd rather my children have the money saved from burying me and having fancy stuff since I'm not alive to see what it's like. Like that footballer who went missing in that plane crash last year, something like 2 million was spent to recover his and the pilots body. I'd rather my family have 2 million and make good use of it than waste it to find my body just to bury me. What value do you get out of it?
Hello,
I totally agree with you. I would like to die. Unfortunately , this woman is currently very ill and she can't do anything by herself. So she doesn't move , she doesn't drink, nothing. She is totally dependant on her relatives. It is a really nightmare. Every morning, she has to wake up and instantly , the horror comes up over her. So sad for this lovely family. If I were the daughter, I would change my mind. No marriage, no children....another life. A life in which nobody depends on me, a life in which I don't depend on anybody. A life like if every day would be the last. And put money aside to disappear, in due course.
Suicide is a sin.
I’m quite surprised she didn’t give an interview after her results was it just too hard to talk about. Or say it out load or was this just how it was always going to end ?
Of course it’s her choice. Of course. I just found out I have inherited the gene that means I will most likely get breast cancer etc. After my sister was diagnosed with stage 3 breast cancer. I’m 45 My sister is 47. My mother died of ovarian cancer at age 62
That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently
It's still don't mean you'll get it
God bless you and your family
Yes. Too upsetting to talk about. It is NOT like getting results for breast cancer likelihood. Because with breast cancer, there are things you can do. You can have all potentially affected tissues removed, for example. You can have close monitoring (at least in my country, with increased BC risk you get access to special programmes fully paid for by health insurance. ) With Huntington's, it is a death sentence. If you have the gene, you will get the disease and you will die from it, no chance to fight it at all.
Doug Addison has this condition but no symptoms!
Oh really? Whats he doing there? Sounds wrong....
I would like to know what happened to her.
Preferiria ignorar.
No hacer la prueba. Si sale positivo, es como tener la espada de Damocles sobre uno.
So sad
Don't have kids if you know you have it and they could have it as well. Even if they wouldn't have it themselves children deserve a parent who doesn't have HD.
My mam has this again no known family history best wishes to you all x
@@taylorscott7402 if that was the case why is there still no cure
@@shelleymurray1341 you know you will never got to understand herbal medicine that's why you are saying this
@@shelleymurray1341 I thought of this before until i contact the herbal doctor my self
@@taylorscott7402 am sure if there was a cure the doctors would no about this
X
Story maybe
I would want to know so that I could decide not to have children
I don't think that the daughter Danielle should count her life, her marriage, etc... as being over or basing everything from now on around the results that she got stating she has the Huntington's Disease Gene... There are so many things that come into play regarding our individual lives, and also our lives as far as having children, etc... Things being individual, genetic, a fluke, a mistake, hereditary, a statistic, environmental, rare, miraculous, etc... You never know EXACTLY what your future holds or your family, friends, children, parents, etc... The test results that Danielle got could be wrong or even if she is positive for the Huntington's Disease Gene who knows maybe she won't even develop it at all in her lifetime and if she has children whose to say that her children will have it for sure or develop it in their lifetime??? Maybe there will be a vaccine or a cure soon or maybe Danielle and her family will be the link or beginning of having that vaccine or cure??? Medicine and Technology are a tremendous blessing and have come a long way and helped so many and could help so many more but be careful for absolutes... This is just my opinion and my comment coming from my thoughts after watching this video right now... May EVERYONE have a blessed day and a blessed life...
This is being imprisoned in your own body. Your brain is 100%.
You DO NOT want to pass this on.
Keep doing range of motion on all joints including her neck. Eventually her body will become like stone. And she will be in pain.
Do you really think they don't know that?!
I thought it was Kimberly clark?
all thanks to doctor stanley for curing my from huntington disease i am forever grateful sir