I have Huntington's Disease...My story
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- Опубліковано 26 січ 2020
- Hi all,
It has been 2 years since I last uploaded. My life took a complete turn a few years ago, and I could not find the words to express what I was going through. I tried to film so many times but I couldn't find the strength. I felt as though I could not continue to create content on here without sharing my story and how my life has been changed forever.
If you would like to learn more about Huntington's Disease, to apply to receive assistance for HD, to donate, volunteer, etc, please visit us at www.championsforhd.org
Champions Socials:
YoutTube: / @championsforhd8185
Instagram: @championsforhd
Twitter: @championsforhd
FB: / championsforhd
Thank you so much for supporting me in this new phase of my life. Together we will cure HD.
My site: www.shelbylentz.com
@shelby_lentz
The Shepherd's Gift:
www.theshepherdsgift.org
Phillip Reed
Attorney for nonprofit/small business startup and planning for disabilities:
murphyreedlaw.com
#hdcanttameme championsforhd #huntingtonsdisease #thepowerofyourvoice #useyourvoice #yourtruthmatters #letstalkabouthd #hdawareness #hope #jhdawareness #livepositive #livingpositive #huntingtonsdiseaseawareness #curehd #curejhd
My mom died of Huntington’s . We didn’t find out until after she died when my older sister was diagnosed with it. I always thought my mom had schizophrenia. She was even in a mental hospital at one time and they did electric shock. She never knew who her father was so we didn’t know it ran in our family. She was very mean and abusive. I don’t blame her. I understand she couldn’t help it. My sister died from it. It was horrible to watch. Now my other sister is showing signs. She is being abusive to her daughter. She can’t remember what she does also. I think she is in denial. I haven’t been tested. I’m scared 🥲. Praying for everyone affected by this horrible disease. Praying for a cure.
Yes I praying for your family and your strength 🙏🏽 I'm Soo sorry for your lost 🙏🏽. Pastor Kevin la Ewing is a good knowledgeable person on these experiences try him 😊. God bless you 🙏🏽
Im so very sorry for your losses.
We have come a long way ( in Australia anyway) in caring for and providing support for people with Huntingtins and their families. It is a prolonged and difficult road, but it is possible with good care to have great quality of life throughout. It is not usually painful, so thats a plus, many other conditions are. Life is not just waiting to die, fearing death. Its about living every day as best you can. None of us know how long we've got. Accidents and 'acts of God' can happen at any time.
@@taleandclawrock2606 thank you so much for this beautiful insight . I really love and am thinking about what you said 😊🙏
Should we test? I just came to know about my fathers death reason yesterday (28years ago he died ). My brother has symptoms ..
I am so sorry you went through this 🙏
As a college student, I was a CNA. I had a 28-yr-old patient named Cindy, who was in the nursing home. She had been diagnosed as having Schizophrenia and was dumped there by her parents. She had very unusual movements, which they identified as "behavioral." Even the nurses berated her! She would try very hard to stop the chorea. You could tell that it took all her might to stop swaying, jerking, etc... I felt so sorry for her, and I was sure that it was not behavioral. Cindy was adopted. Looking back, I am 100% sure that she had H.D. Cindy was only 28 years old. Her symptoms had started when she was in college--and those symptoms were progressive.
That is a common type of story for generations before the genetic test! Same with my great grandmother being falsely diagnosed with schizophrenia. I’m thankful for more access to resources now 🙏
That made be sad. She tried to not move but was involuntary
It seems that most people who work in the nursing homes are abusive and nasty to patients. Hope karma comes back to bite them. That poor girl. You should've reported all of them for mistreating her. She should've never had to go through that.
Juvenile Huntington's in your 20s is no joke. Don't know how much medicine has advanced, but a decade ago, if you showed symptoms of it, you most likely have 5-10 years left that will be devastating to your loved ones.
On my mom's side, my grandmother and her brother both passed away from Huntington's. My mom's 2nd cousin also passed away from Huntington's as well a decade ago.
My mom is in her early 60s and I've seen her being fidgety with her hands while relaxing on the couch and her feet twitch constantly. Her memory is slowly starting to go as well. She has asked me at least 5-6 times if I got a new pair of boots after I've had them for 3 years and wore them in front of her countless times.
On my dad's side? My grandfather passed away from Alzheimer's in his mid 60s and my grandmother passed away from dementia.
Essentially, my genetics are fucked. Haven't been tested to see if I have the Huntington gene yet, but I might do it because my mom is very ignorant and denies showing any symptoms of HD.
They do that test as a basic neurological test it will tell any abnormalities. And being drunk lol my brother was pulled over and the cop wanted him to say his abcs lol he said can I sing it lol
Being a nurse I always said I never would want to know if I had it. Fast forward finding out my Dad had it and passed away (parents divorced). He was an alcoholic, abusive. My grandfather (his father) committed suicide day after I was born. Thankfully I do not have it. I pray for all my family members who died and/or have it. They are my heroes. I love them all more than they will know
That is terrible I’m so sorry. I am so happy to hear you do not have it.🙏
People who walk the walk with Huntington's are the true heroes of this world.
Amen!
Hero’s for having a disease ? That’s ridiculous. It’s life. Life is hard and we all have battles. It’s a curse not a heroic badge.
@@zhaviyah84do you have it?
Jesus man, have a little compassion@@zhaviyah84
Im only 18. I don’t have Huntingtons Disease nor do I know anybody who has it. The amount of respect and admiration I have for you and every other person who receives this devilish diagnosis and doesn’t let it slow you down is more than you can imagine. I pray that in the near future there is an antidote that will rid you of this or at the very least slow the progression. I will never forget this video. Big hug ❤️
Forgot to mention I am also from GR!
This comment made my whole day. Thank you so much. Not just for watching but for your kind words and support 🙏
Hope is important. Thanks for this comment. Stay strong Shelby! We are with your journey💪
This words are gold for me. Thanks
My grandson got diagnosed 7 years ago he’s nearly 32 now it’s a very cruel disease he’s not the same boy I watched growing up he was never aggressive growing up he was the most pleasent lad you could wish to meet .
Hi honey, how brave you are to share your story! My husband has Huntington’s Disease, and he has known for 23 years r/t gene testing. You are a beautiful young lady, and I am praying for you. My husband is now 75 yo, and although he is declining, I am a retired nurse and I am keeping him home. I retired from UofM, and there are research infusion drugs out there to help. I just subscribed, and I am going to follow you. God Bless you!!!!
This is so sweet, thank you for sharing 🙏 I’m so appreciative. Sending you and your husband prayers💙
@@ShelbyLentz 🙏🙏❤️❤️🎚🎚
God bless you being a care taker is not easy sometimes more strength to you and prayers 💕
My step daughter had Huntingtons disease. I met her when she was 13 year's old. She just passed away . It's a horrible disease . Prayers they find a cure. 💔
I am so sorry for your loss😔
Thanks so much for sharing your story - you're incredibly brave. I lost my Dad, brother and nephew to HD. I won the genetic lottery & tested negative. I have so much admiration for you and others who are bravely sharing your experiences and raising the public awareness of HD. Praying for you and all other families impacted by this terrible disease.
You have no idea how much your comment means to me. Thank you so much. I’m so sorry about your own family. God Bless your negative diagnosis. I know the hurt, the grief, and pain still is numbing regardless of a negative diagnosis though because you still have to watch your family suffer 💔 sending your family love and blessings 🙏
My mum was sectioned 3 times and Doctors were convinced she was an alcoholic / drug abuser (her brain scan showed the brain of someone in their nineties, my mum was 62). Eventually she was tested for HD after being misdiagnosed with CJD amongst other things. Her CAG repeat was 40 so just in the full penetrance range. Her sister subsequently got tested and also has HD. I am clear but none of my siblings or cousins have been tested. It's not discussed in our family, it is like the elephant in the room. Thank you for your honesty and bravery, very much appreciated. Much love 💕
I’m so sorry to hear that 💔 it is such a common mistake that people with HD unfortunately go through. Sending prayers and love to you and your family 🙏
Kevin la Ewing is a good pastor for this I pray for your strength and happiness.
The world needs more people like you
Thank you 🙏
The nurse asked “Are you sure this is the right time to get your test results?”
HELL YES!
Everyone needs to know BEFORE they get pregnant!
Maybe I'm selfish but I would never have children.
@@leticiabarros2568that’s the point, that’s why you need to know BEFORE you ever get pregnant.
@@omgurheadsgone I know but even knowing and think other ways like adoption would not be a option for me. If I had it, I know I'm going to die, or get super sick, and it's a financial emocional burden
@@leticiabarros2568I am exactly the same. I don't think it is about being selfish
@@leticiabarros2568 That is not being selfish.Being selfish would be knowing that you have HD and still
having biological children...unless you have Pre IVF testing.
I was diagnosed in 2015, too, 2 years after my major symptoms started and a dozen doctors later. Tysm for sharing this as so few know about HD.
I can’t express how brave you are , my friend in now in a care home at 57 and like you my god she was beautiful; her story is a bit like yours: I visit her and she reminds me of fun times 🙏🏻
Cherishing memories is everything. Sending love and prayers.🙏💙
I have been showing symptoms for a year now and I just want you to know EVERYTHING you have said including the God part I relate to ♥️♥️ I want to thank you for sharing your story because it's helping me 😐
You gave no idea how much I appreciate you saying this. All I want is to help others. Sending love and prayers 🙏
❤
My prayers are with you. Hope you are well.
@@ShelbyLentzhi, how do you feeling yourself now? I have a childhood head trauma, and suffering of post concussion syndrome, headaches and brainfog for all my life untill now age 41. Searching a way how to live, I have discovered strange lifeimproving phenomens of collecting bodyenergy and directing of attention, that changes everything step by step, I can clearly see the positive changes just in front of my eyes. And when I directly recognize my traumas and pain, I feel it leads to recovery, I learn myself being Who I really am. May be that is helpful way for your disease also 🤔
My grandmother and several people in my family has this awful sickness. We also have a good friend that has it. Im so sorry i will be praying for you
I’m so sorry your family is suffering from this disease as well. Thank you so much much.🙏💜
I’m watching this trying to learn everything I can because my friend has it and is 34. I talked to him on the phone for the first time in ten years and I was devastated.. we are gamers and have chatted throughout the years but only became real.. for me.. these last few weeks. He hasn’t talked about it and has kept positive through the years.. I just felt like I should share this. Here I am sharing how I feel and this guy (like a true gamer) plays on without complaining not one time to me.
I’m so sorry. It is such an overwhelming experience to learn about Huntingtons for the first time, especially with how brutal it is. He is so blessed to have you, it means more than you can imagine. Sending love and prayers 🙏💜
😭💖💖💖💖💖💖
I have a friend whose husband died from HD. Their only son has told his mom he will not have children because he does not have the right to maybe pass on a terminal disease to an innocent child. So sad but he is absolutely right. Prayers for you and your family.
That is so heartbreaking. Thank you for sharing 💜 I appreciate the support 🙏
@@ShelbyLentz how are you doing now?
@@TheMarkmcr hi! I’m doing really well, thank you for asking!🥰 I still of course struggle with my mental health with all of this in my life, but I’m still healthy & free of any HD symptoms. I got married this summer & am still performing live music. I lean heavily on my faith to get me through it all. I’m grateful 🙏
@@ShelbyLentz hope the symptoms stay away for a long time
@@ShelbyLentzhappy to know that you got married . Pls do more videos . Share wedding pics … there are people like me living hopeless!
I am starting the testing process and have been feeling so anxious the whole time. Watching this has helped a lot, thank you so much for sharing and being so vocal.
Hope you are ok
❤❤❤ x
Thanks for making this video. I really wondered how people with this condition may process it. I wish you and your family comfort in these testing times.
Thank you so much 🙏
You’re so incredibly brave. You’re such a strong and beautiful woman! Thank you for sharing your story 🙏🏼💜
Thank you so much for your support and watching 🤍🙏
...
@@ShelbyLentz my girl im seeing has this going on 4 years now BUT her SEX DRIVE i found out makes them well i help her with her FOOD and showering which i like that part only been dating 3 months and i cant seem to give up on her easily could just say BYE but thats not fair
but i hope you dont get MOOD swings dont know what i can say to help or dont want to discourage i HOPE you do well
I’m not sure why this video popped up on my feed from 3 yrs ago. My friend lost her husband to HD about 3 months ago at age 52. He and his dad were doctors and died of HD, plus he lost a sister with HD recently. It’s such a heart-wrenching disease. They were also involved with The Shepherd’s Gift.
That is heartbreaking, thank you for sharing 🙏 I love the Shepherd’s Gift!! It’s such a wonderful organization
Hey Shelby- I'm 27 and our stories are so similar. My childhood was so abusive a screwed up for much of the same reasons. None of us ever knew why back then. HD wasn't a topic, it wasn't on our radar. My family was split down the middle. Nobody knew what was wrong with my mom and she was misdiagnosed and pumped with all sorts of medications like lithium and everything. It always made everything worse and the abuse never stopped.
I feel the same way though. I don't feel any bad blood toward anyone for the abuse that happened. I know that feeling. As I watch my mom decline worse and worse in the only nursing home what would accept her, I have forgiven everything. In the limited words she has now, she's cried apologies. And just as I've gotten to understand her and her disease better- she's being taken further and further away. HD is cruel. It's unfair. Fuck HD - honestly, that's the only combination of words that seem to convey a fraction of my hatred for this disease.
All of that aside though... I just desperately want to hug you through the screen right now. Your story, your strength, you inspire me. The work you've done... it's just... amazing. I don't know you dude, but I feel you. I feel Bre. I've watched the videos and seen the pictures your mom(I think?) has put up about her. She is such a sweetheart and deserves none of this. You, her, your family are in my thoughts.
PS. It's so weird to leave such a long message for someone I've never met before. Probably a lil awkward, but whatever. It's just... your story touched me and somehow I wanted you to know someone out here has heard you and cares so very much.
Thank you SO much for your support and watching this! I can’t tell you how much your bravery to share your story means.
I’m so sorry you had a similar situation. I’m so happy we can relate on that level, but it breaks my heart knowing others had a similar unfortunate situation. Not being able to make sense of the abuse, the misinformation about this disease, and how to cope with it is the hardest part.
Forgiveness has been the most releasing thing for me. My father is also declining, not as fast as my sister, but still declining. I try to be supportive of him and the fact he is sick. I’m so sorry to hear your mom is not doing well either...it just breaks my heart.
Yes! That’s Breanna’s mom who posts on the HD groups (my step-mom.) Breanna is the strongest person I’ve ever met. She gives me so much strength. I just wish I could heal her.
I’m so grateful we can be connected through social media. I would love to give you a big hug. 💙💜 not awkward at ALL!! I’m just so grateful for your love and support. If you need a friend, please always feel free to reach out. We’re in this together. 💜💙
I am a Clinical Lab Scientist and remember when the testing became available for HD. I remember discussing with coworkers whether we would want to be tested if we knew we were at risk. At that time there was no way to see it except as a death sentence. I do understand trying to figure out whether it is worse to know you have HD or just accepting you are at risk and live with the uncertainty.
Wow! Thanks for sharing. Crazy how things evolve so quickly. I’m praying science will continue to evolve for a treatment or cure 🙏 it is a hard call for sure, each person has their own view. Thankfully, even though there are hard mental days with knowing I am positive, I am still happy with my choice to test.
Shelby, thank you so much for sharing your story and using your voice to support Huntington’s awareness and care. 🙏🏼💗
thank you so much 💜
Thank you so much for sharing. I know that wasn’t easy for you. What a beautiful and brave person you are. I love you Shelby.
thank you so much, truly❤️🙏
I’m new to your videos Shelby and commend you for your courage in discussing your HD. My wife has HD and her father and brother had HD as well. My daughter is 25 and tested positive this past year. She is in the “gray” area. My son is 28 and chose not to be tested at this time. My life has taken a turn this week as my wife’s symptoms suddenly increased this past week after a brief hospitalization for an unrelated and serious UTI infection that was not responding to medication. She is suddenly experiencing schizophrenic life symptoms. I wish I was as brave, to vlog you and your family’s HD journey. We have the support of our family and church, and support is very important. Faith in Christ has helped us tremendously. I’m glad you are in a good place. My wife tested positive (mid 40s) at 30 (late 90s) and is now 54. We have had so many “good” years with mild symptoms- and I’m glad we tested and had so many years to process the reality of it. I am also so sorry to hear about your sister’s passing.
Hi there, thank you for taking the time to watch and hear my story. I did it in the hopes that it would help others who are going through something similar and raise overall awareness and I am so happy it did. I am so sorry about your family's own battle with the disease. It is hard for every person regardless of if they have it or not. Being a caregiver and just loving someone who is struggling is so hard on the heart because you want nothing more than just to take it from them. It sounds like you are an incredible husband and dad. That is so important to have those support systems with HD and you have given them that. And thank you for your condolences. I miss her dearly, but I know she is in a better place. I am definitely still trying to grieve and cope. I pray for all of us that we find a cure.
Shelby Lentz thank you Shelby and keep on putting out your stories and encouraging others!
🙏🙏🙏
I never watch videos about this topic and youtube has recently been suggesting this and several other problems I worry about daily like it's threatening me over and over.
My grandmother has Huntington's Disease. My mother did not have the gene. She got tested after my uncle was diagnosed. Praying for you. Your blog will help so many.
Thank you for sharing. I’m so happy your mom did not have it, what a blessing!🙏 thank you for your support 💜
I absolutely loved hearing your story! My dad is in stage four of Huntingtons disease and I have had my first netting for being tested! You are so strong and doing amazing 💙💙💙
Thank you so much! You are so brave and strong! I am wishing you the best in your testing process. 💙💙
This disease is so cruel and you are amazing your voice is being heard!! I am living in Australia and about to be tested and you have inspired me so much. Thank you for being so raw and sharing with us and for all the work you and everyone are doing. Much love to you xx
God bless you, thank you! Sending you prayers 🙏
@@ShelbyLentz how are you doing now?
Our stories are pretty similar! My father had HD and schizophrenia. My dad was also very abusive to the point where he was forced out of our house by CPS. Also, my sister has a CAG count of about 140. She is one of the youngest to get diagnosed with it. Im 15 and everyday I wonder if I have this disease because I have trouble walking and twitches all over my body. I've also been eating slower. But whether I have HD or not, I am going to live my best life and try to see the good in the world everyday! I know that it is hard, but it's even worse when you only think about the bad! That's something that I have learned after getting diagnosed with anxiety and depression a year ago.
I wish you full support and quality of life, your attitude is great, thats the healthiest approach, to live each day as best you can and enjoy the simple pleasures of life. 💞💞💞
@taleandclawrock2606 Thank you so much! I hope that you have an amazing quality of life as well
Sending you love and prayers, that’s a great outlook 🙏 thank you for sharing your story!
@ShelbyLentz I really appreciate the thoughts and prayers, especially since I just lost my sister with JHD 5 days ago. It's been really hard, but at least she is at peace and I don't have to worry about her having seizures anymore. Sending thoughts and prayers your way as well
Rip 🙏♥️🌹
Thank you so much for sharing. You are a beautiful and brave girl. God bless you.
Such courage, honesty, love. My heart is so deeply moved. Yes, I have an extra prayer for Brianna - and for you too, Shelby.
Joanne K thank you so much, we are appreciative of every prayer 🙏🏻💙💜
🙏🙏
Sending much love and good wishes ❤
Thank you 😊
You are beautiful inside and out. Thank you for sharing your story.
Thank you for sharing your story. Loved hearing the background for Champions for HD. God Bless you and your family and your passion for sharing the HD message.
G Smith thank you so much! 🙏🏻💜💙
❤️❤️ love you and dan!!!! You both are amazing people!!
Lacie Nash he is pretty great!!💜
Thank you for sharing this, my grandma passed away early 2000 and was Mis-diagnosed with Schizophrenia, it wasn’t until my auntie started to get symptoms in 2018 that she was diagnosed with Huntington’s and the behaviours all made sense, my mum has been tested and her count was in her 20s I believe so she is negative, which means it won’t be passed down to me or my siblings, It’s a strange feeling being happy that I don’t have it whilst watching my auntie and possibly my cousins also develop this (my cousins do not want to be tested) I’ve done fundraisers & shaved off my hair to help, I just wish I could do more 😞 I was looking into a part time university course to eventually work on finding a cure which would take up to around 10 years, I still think I should do it. It gives me so much inspiration seeing people like you that know what the future holds and still do everything they can to raise awareness and help others whilst battling their own struggles, I wish I could take it all away 😞 thank you for being so strong x
Hi Amanda,
Thank you for watching and for sharing your story. HD is so unknown and scary, but we have to make the most of every moment and live with hope. I think it is incredible you have considered schooling for HD, if your gut tells you you should I say go for it! We can never have too many people advocating for and furthering the cure for HD. My sister Bre with JHD is on her last moments of life right now and I would do anything to cure this disease to take it from her and ensure no one else gets it. Although I am not a scientist or a doctor, I believe in the power of using our voices as well. We are in this together! All the best x
Shelby Lentz thank you, Ive now re-enroled after watching your video, I follow you on Instagram and it’s incredibly sad about your little sister, it breaks my heart so much, I guess the only peace you will get is that she is no longer in pain and suffering 💔 such a cruel disease and I hope one day we get a cure x
@@ShelbyLentz prayers for you and your family members! ❤️✨🤲🏻
I’m so so sorry for everything that you’ve been through sending so so much love and support 🩷🩷🩷🩷
Thank you so much 🫶💜💜
I watched your video with tears in the eyes; I'm 38 years old, my father died with Huntington and my elder sister has it currently; I just feel like you it's inside of me and in Algeria we don't have genetic test as I was told; just wait for symptoms and get some symptomatic drugs for chorea... My job is based essentially on cognitive efforts and I started to lose abilities... I have two children and feeling with no reason so guilty towards them. In my religion ISLAM hope in God is so important and we're convienced that there's a better life after death if our acts in this life were Good; I just ask GOD a lot of patience so that I can meet him in peace and accept truly and deeply my destiny; Cuz with all that fear I should say thanks GOD for all the best things I had in life.
PS: You're just Amazing and so BRAVE and I believe you still have a brilliant future ... trust me.
wow thank you for sharing your own story. I am so sorry for what your family is going through with HD. It makes me so sad, and surprised, they told you their is no test for you to take there. It is definitely scary living in the unknown. I use my faith in Jesus to get me by day by day, even when it gets scary and uncertain. thank you❤
I’m a nurse and I’ve seen families affected by this. I hope there is a cure soon
Thank you, I definitely do as well. Thank you for all you do as a nurse💜
ok really some people think there is no cure for Huntington's disease but to say i know they are wrong if you all noticed the diseases don't grow in alkaline environments thats the cure for Huntington's disease or any disease for that matter. Good luck for people who actually want to live good luck
@@mathewrivard1447 I want to know more ?? I know alkaline starves cancer but I didn’t know it could help with this ?
@@fatherinlaw8575 it's basic knowledge that no disease can survive in alkaline environment if you can starve the disease by keeping them on the diet it might slow the process of the disease or even kill it.
@@fatherinlaw8575 alkaline environment is the key for curing any disease.even cancer for that matter
I have been watching alot of HD videos on you tube. It's only listening to the impact of your families and the struggles you are facing is just overwhelming to hear and to know how your generation's coping. Thank you au much for caring and sharing. Sending you and your family so much love, 💝
Thank you so much 💜💜
You are one amazing young lady, God Bless You, my Love, Hugs and Prayers are with you sweetie🙏♥️🥰♥️🙏♥️❣️❣️❣️❣️❣️❣️
Thank you so much! Thank you for watching and your support ♥️♥️
Nice to meet you you Shelby
New Subscriber here from Amman Jordan Middle East
Warm Hugs to you
Huntington’s disease is so cruel and devastating
Bless your heart
Thank you so much 🙏💜💙
Bless you. My heart breaks knowing you are faced with this horrible burden. May new meds & treatments come out to cure this. You are a beautiful and strong woman.
Thank you so much 🙏 we pray everyday for a cure. I’m am so blessed to have so much supoort on this journey. Your words mean so much.
Very sorry for the loss of Breanna. Hugs from Costa Rica.
I am sooo sorry for your loss, that must have been so difficult - I can’t imagine 💔🙏🏻💔
thank you so much❤️🙏
God bless you, beatiful girl, and soul!!❤️❤️😍🙏💪
Giiirl. You are so strong! Much love and virtuel hugsies from denmark! keep fighting!
Thank you 🤍🙏
Lots of love to you I’ve nursed people with HD and I just wish you well, make every day count xxx
Thank you so much! God bless you for the work you’ve done 🙏🤍
Thank you so much for sharing Shelby..
Tammy Birgy thank you for watching and your support! I am so grateful.💙💜
Your a warrior and an inspiration i pray and wish nothing but the best for you and ur family u are a very strong person i wish i had half the strength u have
Thank you so much 🙏 we all have highs and lows…you have strength 💜
What an amazing beautiful woman you are. Thank you for this video. New Subscriber here. God's blessings upon you and your family, Shelby. Love and support from Philadelphia.
Thank you so much
Stay strong we are all here for you u are not alone
You are so brave and amazing. I am praying for you and your family. ❤
thank you 🙏🤍
Thank you for telling your story. All my best wishes to you.
Thank you 💗
Words cannot express the love I feel for you, while watching this. You have been through a lot. My heart goes out to you.
Thank you so much 🙏🥹🤍
You are very eloquent and your positive attitude is truly inspiring! I pray that God may give your sister peace during this difficult time as well as to your family🙏👪💪💜
Thank you so much 🙏💜💜
I was in the HD site when I came across your story..Listening to your story is so powerful I’m so sorry you inherited the HD gene..I understand what your going through as my two sister’s have HD..their together in the same nursing home and are in their last stage of the disease..I miss them so so much..Thank you for sharing your story God bless.
Praying for your two sister’s and your family as a whole. Thank you for your support 🙏
I don't have Huntington's but I do have a complex and almost lethal genetic disorder. My heart goes out to you and I hope that as time goes on they find fantastic treatments for you and everyone else with HD and neurological disease. Thank you for sharing your story. I admire your resiliency and strength. I knows it's not fun to be forced to be resilient but you're doing a damn good job anyways.
This is so kind, thank you. And I’m so sorry you are going through your own genetic struggle. I wish we had access to treatments while we anxiously wait for cures. But I pray every day. Keeping the faith. Praying for you as well!🙏
You are an inspiration. Your story has blessed and graced my life.
God bless you, thank you so much 🙏
You are so beautiful, and so strong ! God love you for sharing your story. You will be a huge spokesperson. Prayers for you and your family.
Thank you so much 🙏
So well done Shelby! I'm thinking of you and Breanna and your entire family. Hugs to you.
Monique Cashin Thank you so much!💙💜
Hello shelby came across your video by chance. Im realy sorry to hear that you have been diagnosed with HD. My mother had this awful illness for 17 yrs she passed away 2 yrs ago.and all her 5 sister have it n now my sister has it. God bless everyone with this awful disease thank you for sharing take care .
Thank you for watching 🙏 I’m so sorry to hear about your mom and the rest of your family. It is such a terrible disease. We’re in this together! Praying for a cure🙏
Very sorry to hear this but I have always seen how strong of a person you are, God really shines his light and strength through you
Sydney James Sydney...thank you so much for your support and kind words. My heart is so full right now. Thank you 🙏🏻
You truly are an amazing, beautiful courageous soul, what an incredible uplifting video. Luckily we don’t have this awful disease in our family, my heart goes out to everyone with it but especially you,, Brianna and your family. Love, thought and prayers. Fly high and free Brianna.
Thank you so much 🤍
I have Huntington's disease so sending you lots of love and remember yourva warrior princess 🦋❤🦋🎶
Thank you 🥹💜
I cared for a lovely man in his mid fifties with Huntingtons at a daily respite centre.
He was a wonderful man and it was heartbreaking watching his deterioration and he was very hard to understand and had to drink thickened drinks as Huntington sufferers all die from choking to death and that thickened drink stopped this from happening.
We eventually lost him as it was not safe for us to have him at our centre any more.
I have thought about him often over the years though i know he would have passed by now but it was the sheer brutalness of this disease that makes me feel so sorry for anyone that has it.
I pray with all my heart that the medical profession comes up with a suitable treatment to intervene with the horrid effects of Huntingtons.
Take care xxxxxx
You’re such an inspiration. I’m carrying a different cross that involves custody of my 11 year old son, and a recovering addict. You are authentic and beautiful inside and out and touched my heart. 💕 I will keep going!
I believe in you! Thank you for your support and for sharing your own journey. It’s never easy but it makes us stronger. Sending you love and prayers. You’ve got this 🙏
You are brave and brilliant young lady-you may not realize it, how your information is opening so many eyes, and thank you so much-you’ve a purpose in this world. May the lord grant you his healing hands.
Thank you so much 🥹🙏💜
Thank you for sharing! This is such important information for others to have about the disease, testing / diagnostic /quagmire/ obstacles, and for you to share and process! (I’m only 1/2 way thru, time for bed, but will resume tomorrow! ) What an amazing young woman you are - truly a blessing to the world. Look forward to learning & following!
This is so incredibly sweet! Thank you so much 🥹💜 I appreciate the support 🙏
Thx for the voice! On the same journey here, take care and make the best of it !! xxx
Love and prayers 🙏
Prayer's going up for your sister & for you too Hun!
Thank you 🙏
Thank you for sharing your story. I am related to a person with HD and it is so sad how people treat the person with HD when they are outside, they just asume that they are drunk people.
It definitely is💔
That happened to my niece. She had her children at the local park. Other people at the park thought she was drunk and called the police. It was devastating for her. She passed away a couple of years ago. Soon after she died her sister started to show symptoms. She was told she tested negative so it was a real shock. I worry about my great niece and nephews. So far no symptoms but they all have that 50% chance. So far they do not want to be tested. I respect their decision. HD is a terrible disease!
Thanks for sharing your story ❤️
Thank you for the supoort 🙏♥️
Some people believe we choose our next life when we are on the other side, in between incarnations❤️.
May you, your sister, and your family be forever blessed.
Something new to me. Knowledge is power. Thank you so much for your video.
thank you❤
you are incredibly brave and lovely. i pray for you xxxx
Shelby, sorry this disease came into your family's lives. I'm not dealing with this disease, but I just happened to see this channel and decided to watch. You spoke so well. You are such a strong, inspiring, encouraging and positive young woman. I believe you will help many people.
I love how your song was a connection to so much to bring forth your life's purpose. May healing be your and your family's portion. Keep up the great work!
This is so kind, thank you so much 🙏🥹 I appreciate it 💜🩵
I just discovered your channel. Thank you for raising awareness for this disease. I had a beloved cousin, in the family by adoption who had HD, and it needs so much more attention. I'm also a female musician maybe just a bit older than you, and I was recently diagnosed with MGUS, a blood disorder that needs to be watched closely because it's precancerous. Not comparing to what you're going through, but seeing you out there rocking out on stage and not letting your disease stop you is inspiring to me. I wish you all the very best!
Thank you so much for sharing! I’ve known lots of families who have found HD through adoption as well. It’s so hard for I watch anyone go through. I’m so sorry you are also going through a terrifying battle. Sending love and prayers 🙏
Your so brave! My heart goes out to you. I just saw on fb my dear childhood friend passed at 51 of this disease 😭
I’m so sorry for your loss 🙏💔
My son-in-law has it his mother had it as well it’s just heart breaking bless you for sharing your story
I'm sorry to hear that 💔
Thank You for sharing, I am adopted, 50, and symptomatic. I am not sure I want to know. I hope you have a good long time before you have serious symptoms, and wish you well. ETA, just went and listened to some of your music, your voice is as just as beautiful as you are.
Thank you so much 🤍 sending you love and prayers 🙏
Wow, thank you for sharing this, ❤
You are a beautiful, strong and brave young lady. Thank you so much for this video, words cannot describe how much this knowledge is needed. God bless you and your family especially at this moment in time❤️ I also relate in a lot of ways when it comes to this cruel disease, praying for you all and sending so much love xxx
Luciee Rossiterr thank you so much 🙏🏻 we’re in this together 💜💙
I am praying for you and your family. Lord, bring revelation, inspiration and all healing in all ways.
Thank you so much❤️🙏
You are so beautiful. I'm so sorry to hear all of this.
thank you 🙏
Thanks Shelby I will tell people in Slovakia about Your movement people here also have to start to talk and to wake up not just hide when they are HD positive. I started to do it here and video like You did encourage me that I have to continue in this.
Vlado Vaclavik Hi Vlado! Thank you so much for watching and for the support. I truly wanted to help people and raise awareness when I posted this and I’m so happy it is doing both. We are in this fight together 💙💜
My heart goes out to you and your family. It's tragic. Awareness will go so far in stopping this disease This generation can get educated about it, get tested and stop it in it's tracks in many cases. God have mercy on all who are at risk and are already dealing with this
PAMELA DOYLE thank you so much! I absolutely agree. Awareness is so important, along with education. I hope with both of these we can cure this disease!
ok really some people think there is no cure for Huntington's disease but to say i know they are wrong if you all noticed the diseases don't grow in alkaline environments thats the cure for Huntington's disease or any disease for that matter. Good luck for people who want to live
Huntingtins cant be " stopped in its tracks" Only some symptoms can sometimes be eased, or the person cared for better so they can be more comfortable. At this time, Huntingtins is always progressive, always fatal, and how quickly or slowly it takes is dependent on the degree of particular gene variation. Some will live 20 or more years in slow decline, til old age, others will go in juvenile years in less than 10 years.
Thank you for sharing. The bravery you display is so beyond admirable. I’m so sorry to hear about your little sister. I cannot even begin to imagine all that your family has endured…
I have a friend whose father passed from HD. Her sister was negative for the gene (tested bc she has children) and my friend decided not to be tested unless she decides to pursue having children. I have so much more compassion and patience for people who appear mean or angry on the outside since learning of this horrible disease. You never can fully know what a person is going through just by looking.
I think fear of the unknown is probably universally the biggest fear people experience. And you handle it with such grace, as does my friend. I wish you the best in this life, thank you for sharing such an intimate story. I hope we can find a cure for this awful affliction.
Thank you for your kind words and support, and for sharing your friend’s story as well. My heart breaks for everyone experiencing it. I really appreciate you taking the time to listen and support 💜🙏
So tough,you have such a great mindsetc❤
Prayers for you Sweetie 🙏
Thank you 💜
Praying 🙏 for you and yours inbrace the time you have with your family 👪 and friends and such may God bless you and yours
Thank you so much 🙏💜😇
Idk how you managed to talk about this. You are amazing.
Thank you so much 🙏
i see these things as a family curse. thankyou for the video never knew of this before, you are a strong woman and wish you lots of joy yet to live ❤
thank you so much 🙏
Thank you so much for sharing your story. I have a good friend that has HD and her 16 yr old daughter has been living with us and is struggling to come to grips with her mother's behavior and the future. This is so powerful.
leann austin thank you so much for watching and sharing your connection. I am so sorry your friend and her daughter are affected...I pray everyday for a cure. I’m happy this video can bring some awareness and light 🙏🏻💙💜
I'm a Senior Citizen from Ireland and I am humbled by your searing honesty ❤. I love your strength and will. You
and your cause will be in my thoughts.
Thank you so much 💕🙏
I have Huntington disease and thanks for sharing 👍 🙂 ☺
God bless 🙏🤍
Thanks for sharing your story. Very sincere. So great you started a non profit. Best to be proactive like you said.
thank you so much❤
I have a niece, who is 40 now, that has Huntingtons. It was from her dad's side. He's dead now but he was always abusive to his family. I've seen her mother with 2 black eyes and her running from him because he was chasing her with a loaded rifle. He cracked his own mother's head open with his fist because she didn't have $20 to give him. Tiffany (my niece) was very young when he tried to drown her under cold running water because she was crying.
Wow. This absolutely breaks my heart. I pray for a cure everyday. My prayers are with your family. That is so awful.
Its one thing to understand that Huntingtons can cause symptoms identical to severe mental illness in people who may or may not have had any such symptoms prior to onset, , its another thing entirely to have to live with it. Very traumatising. I hope your family members are safe now, and all getting the care needed.
So sad
What a wonderful beautiful spokeswoman for God & this horrendous disease