This week’s blog is written by Tanita Allen, a passionate advocate for raising awareness about Huntington’s Disease (HD).
Living and confronting the challenges of HD directly, Tanita is resolute in her commitment to promoting awareness of the condition.
Picture this: a relentless condition that steals your control, your clarity, your very essence.
That’s Huntington’s Disease for you, and I’ve been caught in its storm for what feels like an eternity.
Depression, mood swings, and personality changes are just the tip of the iceberg when it comes to HD.
Some experience stumbling, clumsiness, involuntary jerking, difficulty speaking, breathing, swallowing, or even moving.
And if that isn’t enough, HD has no cure as of yet. Only symptomatic treatment is possible through drugs.
Let’s rewind to the beginning of my journey—a blur of uncertainty and fear. It took a mind-boggling two years to even put a name to the monster wreaking havoc on my body.
Imagine the frustration of not knowing what’s wrong, of feeling like you’re fighting an invisible enemy. And just when I thought things couldn’t get worse, I found myself trapped in a toxic NYC apartment, the perfect breeding ground for my symptoms to escalate.
But here’s the thing about adversity—it doesn’t discriminate. Being a Black woman only added layers to my struggle.
The medical and legal systems, designed to protect and heal, seemed to work against me at every turn.
It was like fighting a battle on two fronts, with no end in sight.
Yet, in the middle of all the chaos and despair, I found a flicker of hope—a determination not to let HD define me. I refused to give up, and my efforts eventually bore fruit.
Fast forward to today, and I’m not just a survivor; I’m a published author. My book, “We Exist,” is more than just a memoir—it’s a lifeline for those grappling with their own demons.
Through its pages, I offer not just sympathy but a roadmap, a guiding light through the darkness. Click here to grab a copy.
“We Exist” is my way of saying, “Hey, you’re not alone. I’ve been there, and I’ve made it through.” But all of my determination and efforts stem from my mother. She was my biggest cheerleader and my guiding light.
You see, HD is caused by a faulty gene, and if one of your parents has this disease, there’s a 50% chance that you’re likely to get it as well. In my case, my mother had HD as well. But it is all due to her that I am what I am today, and I couldn’t be more grateful.
Besides advocating for HD through my book, I have made it my personal mission to raise funds to support further research surrounding HD in hopes of one day finding a cure.
Thank you, Tanita Allen for sharing your guest blog with us. We hope you enjoyed reading it!
If you’d like to write a guest blog for Beacon, find out more about sharing your story.
