I have Huntington's Disease...My story

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.

Champions Socials:
Instagram: @championsforhd
Twitter: @championsforhd

Thank you so much for supporting me in this new phase of my life. Together we will cure HD.

@shelby_lentz

The Shepherd's Gift:

Phillip Reed
Attorney for nonprofit/small business startup and planning for disabilities:

#hdcanttameme championsforhd #huntingtonsdisease #thepowerofyourvoice #useyourvoice #yourtruthmatters #letstalkabouthd #hdawareness #hope #jhdawareness #livepositive #livingpositive #huntingtonsdiseaseawareness #curehd #curejhd

[TJ-jqbz]

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.

[corey]

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 ❤️

[PixieTheRabbit]

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.

[judi]

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!!!!

[Kelly-yipy]

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

[lanaspencer]

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

[sharronfarrell]

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 💕

[Woodman-Spare-that-tree]

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!

[deanr]

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.

[katherinebishop]

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 😐

[rebeccaritchie]

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.

[marial]

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

[brendapyron]

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.

[DomGoddessLessons]

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.

[josepool]

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.

[Iwasneverhere]

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.

[dillydadillpickle]

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.

[clareoconnor]

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 🙏🏻

[TheKashkaRoo]

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. <3

[JoanneKaattari]

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