Huntington's Disease Testing - Michelle's Story & Impact on Life

Michelle from Canada talks about her testing process, testing positive and the impact that has had on her life.
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[@micaelasimon6027]

You are such a brave woman. You are giving hope and a sense of peace to many. Fantastic!

[@bannistg]

Praying that your mum was right that a cure will be found before any of symptoms ever appear. You show incredible courage and strength.

[@daxatthemax]

The strenght of this woman is incredible! so much admiration!

[@michellemuller6025]

Almost a year after this film, I wanted to make a new one! I feel totally different about a lot of this stuff now. And the more time passes the more different I feel too. My life has taken completely different path. I have written various comments about them but always deleted it... but I really have something different to say to replace this message and will when the time is right.

[@huntingtonsdiseaseawarenes850]

Would love to hear more from you Michelle! lovely video

[@geeyoyo]

Hi Michelle, I see, hear and acknowledge the courage and the spirit in your video. My Dad had HD ....My coping strategy is to keep hope alive. Wishing you well, from Laurier near Borden in western australia

[@schumachersbatman5094]

I did find this talk powerful and useful; but I'd love to read what your thoughts are now. What would you change?

[@shawnlove4502]

This video was so helpful to me.. please make another video.

[@michellemuller6025]

Hi everyone!!! I have my next video up finally... kzbin.info/www/bejne/nZqZlmd-eNZlmtU

[@johndavid1585]

You have a great spirit. We’re praying for you and a cure.

[@craigmurrays8873]

You are gifted beautiful girl inside and out. You are serving God's purpose, this is just a blink of an eye our time on earth but our real home in heaven all is good, and your crown will shine there! Keep your strength and never lose sight of the Glory that awaits us all who live for him. God Bless you always.

[@autumnconway3642]

Our loved one was just diagnosed this week.Bless these people and their families

[@Qstudioz1]

It's going to be tough but you got this. I have been with my wife since she was 13 and I was 15. She is 40 now and deep in to this disease I am a caregiver, onset maybe at 32. We are fighting this on so many fronts most people will never know what we go through, but we make it work. I know so much and have researched this so much, that I know more than my wifes doctors. This is my second time going through it. I went through it with my father in law. My kid will never get it I made sure of that.

[@marilyntape508]

Your hair looks fantastic Michelle😊👍💜🇦🇺

[@jeanettedegiulio8220]

You are truly a brave young lady. I pray every day for a cure. My first love from age 17, my forever love was taken from me with Huntingtons Desease. I miss him so very much. I hope and pray they find a cure. Bless you 🍃🌹🍃

[@MARVINGAYE662]

You are a brave, smart, responsible, caring and honest young woman....

[@tonisurman]

Michelle..you are a beautiful intelligent young woman who has shared your story with such intelligence and grace!...I wish you much happiness in your life and admire you for the work you are doing for HD...HD took my daughter in law last year at the age of 43..you remind me of her..she did her research, had an amazing interior decorating career and gave birth to my twin grandkids [DONOR EGG..IVF..HD FREE]..her symptoms started during the pregnancy and I moved in with them to care for the infants and her as well...she lost her 2 siblings to HD also..it came from her father..his mother had it...I hope to see more of your videos in the future!

[@naomibeery478]

prayers for a healthy life

[@susanbond1720]

I WAS DIAGd WITH HUNTINGTONS CHOREA SEVERAL YEARS BACK. ITS HARDER TO HIDE THIS DAILY. I NOW AM DEALING WITH STAGE 4 COLON CANCER. WHATS INTERESTING IS JUST LIKE YOU MICHELLE I FEEL CALMER AND MORE AT PEACE. THANK YOU FOR SHARING. 👼

[@nanatrout5656]

What a credit to our gender. You're the kind of woman who makes me proud to be a woman. I'd much rather watch a reality show like this than those fake "women" we're currently subjected to. You're incredible. All the best to you.

[@palmereldritch_6669]

Wow. This woman is tough, and inspirational.

[@stevesimmons6685]

Michelle, You are beautiful in every way, determined and courageous. Above all you are a lovely lady, very lovely.

[@wheatstonebridge]

dont be creepy, steve

[@stevesimmons6685]

Sonja I’m not being creepy. Sorry if I offended you. I was not being inappropriate in any way.

[@apatzer2883]

Thank you for sharing. I struggle with this constantly.

[@lucieann21]

I’ll never understand how people can bury their heads in the sand. Good for you for being so brave and having the test.

[@HickeyBrent]

I know this is a year old, but I am compelled to comment for anyone else reading. To tell someone who has to deal with this as a fact of life, that the way they are deciding to handle it is "burying their head in the sand" or essentially stupid, is very difficult to hear. As someone who tested positive for the gene, each person has every right to do whatever they feel is best for themselves and should never be made to doubt their decision based on external forces that are not trying to help that person. It is akin to saying "I'll never understand how people can bury their heads in the sand about being gay". That is their choice. Not trying to be overly negative, just inform from a different point of view. Many people live their lives under the thought process that finding out could remove all hope, and that would not be a life worth living. etc. Many reasons. Try to be a bit careful if anyone is reading this today.

[@tubbyk9127]

There’s no cure. No way to stave it off. Many people avoiding the diagnosis have seen HD relatives battle with it and know what they’re in for if they’re diagnosed.

[@egnemet]

Michelle, my family just found out of our history with Huntingtons. A relative was tested positive, she has 12 siblings, some who have been battling neurological issues with no diagnosis but who are now undergoing testing since they have a 50/50% chance of having it. Plus I have near 30 or more cousins who are, including myself, at possible risk depending if our parents are carriers. It is definitely scary but trying to stay optimistic.

[@celikluk]

Hey Elaindria, I will pray for you and your whole family. Please stay strong.

[@nancywalker-keay8361]

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

[@alanasghostadventures2990]

My dad died of HD his mum and then my mum and dad had 3 kids the oldest has the gene. Only today I've started to get the symtoms this week I just know that I have it 😣 I hope they find a cure. I will feel so bad for my mum losing her kids I just know that I have it. I will eventually get tested. Know your pain. ❤

[@khaleesisnow1683]

Alanas ghost adventures!! 🙏❤️🙏

[@autumnconway3642]

Bless you

[@johndavid1585]

You are amazing and inspirational.

[@kathrynoneill5862]

You are intelligent beautiful, special young women. Thank you for sharing you story. You are helping so many people.

[@benbenson7300]

You are a beautiful soul.. I've Been looking up this topic as my friend has it.

[@nancywalker-keay8361]

4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

[@cloroxbleach5159]

@@nancywalker-keay8361 stop. It’s inappropriate to give out such crappy advice to someone, and false hope.

[@PureKiwi15]

Thank you so much for sharing. My mother is suffering from Huntingtons. Me and my sister were actually tested for the illness inside the womb and both results came back showing we have a very low chance of inheriting the disease, but even with those results it sits in the back of my mind and probably my sisters. You're such an inspiration and I truly wish I had your courage. I will be having a second test for the disease very soon. I'm terrified.

[@hankenson]

You are an incredible person who is mature beyond your years

[@MedEthics1]

First I would like to commend Michelle for sharing her experience with Huntington’s Disease and genetic testing. She has demonstrated how useful genetic testing can be and how it can be comforting to many people. At the same time, I believe there are some ethical considerations that must be considered when deciding to perform genetic screening. Firstly, informed consent, or the lack thereof, is a major part of this discussion. Informed consent is a process of communication between a patient and their healthcare provider where the nature of the procedure, the risks and benefits of the procedure, and any reasonable alternatives must be discussed and understood before a patient decides about their medical care. Unfortunately, when it comes to genetic screening, this is often not fully implemented. Genetic screening is such an impactful tool that carries many implications with it. The results can change the course of a pregnancy, alter the lives of entire families, and provide either hope or despair depending on the results. Additionally, if the results obtained from these tests issues a diagnosis on a person, they are stuck with that label from then on. This may be used against them in the future to prevent them from getting jobs or proper insurance coverage and will leave them with the countless discriminations they may face in everyday life. Because such heavy implications rest on these results, I believe that proper informed consent must be obtained before a patient makes their decision. Of course, once that decision is made, medical providers should respect the patient’s autonomy and accept whatever decision that may be without pressuring them or trying to convince them either way. Additionally, since informed consent is so important, that raises the question if it is okay for parents to make the decision to get their children tested? With a disease like Huntington’s where the lifespan is relatively long it is easy to argue that parents should wait until the child is old enough to decide for themselves-but still, how do you know when they are ready to bear the weight of that decision? But when it comes to more severe childhood diseases where genetic testing is necessary for diagnosis and treatment, is it okay then to subject your child to testing without their informed consent? What about prenatal screening or pre-implantation genetic testing where parents may decide to terminate a pregnancy or discard an embryo based on the results? This dives into the whole right-to-life discussion, but it again illustrates the importance of informed consent. Lastly, I think of the ethical issue of equality when it comes to this topic. In most cases, genetic testing and prenatal genetic screening can be very expensive and resource intense. This will be prohibitive for many individuals and prevent them from even being able to make that all-important decision for themselves. Although its not fair, you also must consider that allocating resources to these relatively small populations could mean shifting resources away from other, larger populations.

[@annalubenow1233]

More power to you

[@karenvickery9184]

Thank you Michelle for sharing your story.

[@apatzer2883]

Hi Jeremy. I am with you, I struggle with this decision daily. If you ever want to talk about it with someone who understands, please do not hesitate to drop me a line.

[@jeremydavis1362]

Thank you for talking about the testing and your decsion i fight with the decsion daily on what to do?

[@j-kat2746]

What a hero

[@JonathanHernandez-mm3nd]

May god be with all those with Huntington’s Disease.

[@jorjaygonzalez]

Wow, she's gorgeous.

[@HDWorldclass]

You brilliant person , being the best you can be must be beautiful xxx

[@katytaylor681]

Is there any update about Michelle and her work?

[@thirdeye960]

How to test if it's positive or negative?

[@andreawood8306]

Brave lady to keep being urself and I would also have to know so I could start to live 💜💛

[@Fiona-sg9wh]

You were in a car crash. That could have killed you. So really no one knows how they will die even with the diagnosis of Huntington's. Just lost a friend to this. Just saying as an ICU nurse no one really knows how and when they will go. Life isn't that predictable. Thanks for sharing your story and your thoughts.

[@jazzypoo7960]

My diagnosis was a relief for me too. :)

[@caroltrudgill5564]

Bless you xxxx .

[@nienkeha8906]

Tide Kiosk bless you i wish you the best, i hope the same will happen to me

[@HickeyBrent]

Wow. I felt the same way. I am learning today that it's our anxiety that is a major issue. Everyone has anxiety from something and to live in constant fear of "when is it going to happen? Is it happening? Am I using my time well? Should I just be doing whatever I want with my limited time" is extremely difficult. I was able to realize I had been living my whole life under this anxiety for 20 years. And once I found the route cause, I instantly felt better than I have in my entire life. Better than I thought I was even capable of. Talk to someone regarding Anxiety and stemming from traumatic experiences in your life.

[@nancywalker-keay8361]

@@HickeyBrent 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

[@nancywalker-keay8361]

@@HickeyBrent 4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

[@pasqualinagelsi3399]

Perché non mettete i sottotitoli così capiamo pure noi italiani

[@margepaz]

You hit the lottery for beauty but not for HD

[@ankita6660]

What is the testing process

[@Qstudioz1]

They test your huntingtons gene, to see how many mutations it has..

[@jacqueline8559]

She has an obvious speech hesitant. I pray she stays free of symotoms for many years

[@wheatstonebridge]

Hopefully she isnt experiencing symptoms soon and there will still be a better treatment by the time she is old

[@margaridabras9281]

❤❤❤❤❤

[@marydehaan1991]

Eating healthy along with your yoga along with removing the silver--would thst help? You are so brave and getting as mych information as you can I am sure will gelp, God bkess you

[@Darthxmea]

Mary Dehaan Huntington’s disease was formally discovered in 1872 and there would be a lot of research put into it. Don’t you think if diet or yoga or silver was a contributor in getting it, that they’d figured it out by now? 🙄

[@LectronCircuits]

She's way too beautiful to be doomed to such a gruesome death. Audience wishes her all the best. Cheers!

[@pripri3404]

Would it be better if she were uglier ? Sheesh

[@ddbears3686]

Sadly I could tell she had it just because of the delay in thought. This breaks my heart enjoy your life she's right. No one is promised tomorrow so Embrace every day as as if it's your last. But what a wicked disease to take all those memories and just suck someone out of their own body I don't wish that disease upon my worst enemy. But she's strong and I hope there's a cure in time

[@Johanna040713]

Almost everyone has some "delay in thought". It has nothing to do with HD.

[@beatrixbrennan1545]

@@Johanna040713 I could tell she had it too because of the speech delay.

[@dmguk9931]

xx

[@gunterliam7411]

All thanks to dr Stanley who cured me from my Huntington’s disease I am forever grateful ..

[@theultimatereductionist7592]

Thank you for reading the scientific literature and NOT pseudoscience woo!

[@genevaayte5302]

So she only knows that her paternal grandmother had this. Let's say Michelle is 25; we can make a case that her grandmother was born c. 1943. Are we to understand, then, that the first person in this family who developed this disease was born that recently? So let's go back to 1910. That could be the birth year of her great-grandmother. The question I am asking is at what point did this family realize they were carrying a serious genetic flaw? Even if there was no doctors and no tests available decades ago, did it occur to anybody manifesting these symptoms that something was wrong? And oh yeah, now that you mention it, my mother had these symptoms and and my grandmother and my great grandmother. Hello?

[@HickeyBrent]

All great questions. I think it would have been diagnosed as something different. Maybe put in the same bin as Alzheimer's, dementia, Parkinson's or ALS.

[@georgen9755]

genetic disease, inheritance patterns, diagnosed HD ,

[@angelacc3652]

you don't know yoga..it is just kind of hindu rituals not connected with spiritual and physical health

[@beatrixbrennan1545]

Right! It's a compilation of poses to salute and worship pagan gods. Before I knew this, I went to a couple of yoga classes and really hated it. So much emphasis on putting weight on your wrists, it was not an enjoyable experience for me in the slightest.