I have Huntington's Disease...My story 

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.

People who walk the walk with Huntington's are the true heroes of this world.

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 ❤️

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!!!!

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.

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

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.

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. 💔

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!

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 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 😐

The world needs more people like you

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 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.

You’re so incredibly brave. You’re such a strong and beautiful woman! Thank you for sharing your story 🙏🏼💜

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 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.

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.

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 🙏🏻

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’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.

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.

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

Shelby, thank you so much for sharing your story and using your voice to support Huntington’s awareness and care. 🙏🏼💗

I’m a nurse and I’ve seen families affected by this. I hope there is a cure soon

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.

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.

Such courage, honesty, love. My heart is so deeply moved. Yes, I have an extra prayer for Brianna - and for you too, Shelby.

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

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 💙💙💙

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 so much for sharing. You are a beautiful and brave girl. God bless you.

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.

Very sorry for the loss of Breanna. Hugs from Costa Rica.

God bless you, beatiful girl, and soul!!❤️❤️😍🙏💪

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.

Thank you so much for sharing Shelby..

Stay strong we are all here for you u are not alone

❤️❤️ love you and dan!!!! You both are amazing people!!

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.

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, 💝

So well done Shelby! I'm thinking of you and Breanna and your entire family. Hugs to 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.

You are one amazing young lady, God Bless You, my Love, Hugs and Prayers are with you sweetie🙏♥️🥰♥️🙏♥️❣️❣️❣️❣️❣️❣️

You are so brave and amazing. I am praying for you and your family. ❤

Thank you for telling your story. All my best wishes to you.

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🙏👪💪💜

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.

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

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.

I’m so so sorry for everything that you’ve been through sending so so much love and support 🩷🩷🩷🩷

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.

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.

I am sooo sorry for your loss, that must have been so difficult - I can’t imagine 💔🙏🏻💔

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

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 .

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!

Lots of love to you I’ve nursed people with HD and I just wish you well, make every day count xxx

You are an inspiration. Your story has blessed and graced my life.

Giiirl. You are so strong! Much love and virtuel hugsies from denmark! keep fighting!

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

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.

Thx for the voice! On the same journey here, take care and make the best of it !! xxx

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.

Your so brave! My heart goes out to you. I just saw on fb my dear childhood friend passed at 51 of this disease 😭

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.

Thanks for sharing your story ❤️

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

Prayer's going up for your sister & for you too Hun!

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.

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 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.

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!

you are incredibly brave and lovely. i pray for you xxxx

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.

Sending much love and good wishes ❤

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.

I am praying for you and your family. Lord, bring revelation, inspiration and all healing in all ways.

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

Something new to me. Knowledge is power. Thank you so much for your video.

You are so strong. I loved you even more once you mention God. He is so good. In vitro in my opinion is the best way to stop this disease from continuing in your blood line.

Wow, thank you for sharing this, ❤

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.

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!

Hi. My name is John. I am 56 years old and I was finally diagnosed with Huntington’s in January of 2021. I have been trying to get Congress to pass the bill to help people with HD to forgo the 5 month wait for SSDI and the 2 year wait for medical coverage. I am receiving the medication for free from the manufacturer for 4 months but after that I will be forced to go off of my prescription that’s supposed to help with my Chorea movements. I have tried other places to see if they would help in this struggle but so far I am running into the bill is held up. Thank you for any help and guidance that you can help us with! John

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

You are so beautiful. I'm so sorry to hear all of this.

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!

Dear Shelby, you are such a nice, beautiful, and very brave young woman... I admire you so much, and I want you to know that my thoughts and prayers are with you!! Try to stay strong and positive, lots of love and hugs from me, a person with both addictive as well as psychiatric issues!!😢🙏💖

So tough,you have such a great mindsetc❤

My heart is with you! My family also lives with this cruel disease. I’m the last living in my immediate family but have a cousin with it and in a nursing home. You are doing a fabulous job educating people about HD. Most have never heard of it. Doctors are finally understanding it more. Blessings to you and your family.💕

Wow. For years and years of my life, I went through extremely similar circumstances. My mom was undiagnosed of HD for years, and refused to be tested. I finally managed to get a court order to have her hospitalized & in that time doctors tested what medications helped manage her episodes. She is now diagnosed, taking medication, and in her right state of mind. I would love to form a group to help families going through this. I would never wish those dark times on anyone.

Idk how you managed to talk about this. You are amazing.

Praying 🙏 for you and yours inbrace the time you have with your family 👪 and friends and such may God bless you and yours

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 ❤

Sending prayers.

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.

Sending prayers❤

Thanks for sharing your story. Very sincere. So great you started a non profit. Best to be proactive like you said.