Welcome to ‘Gene Positive’

Steven Beatty avatar

by Steven Beatty |

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When I was a child, my mother would tell me that if I didn’t eat my carrots, I would go blind. I do wear glasses now, so maybe that was partially correct. But it’s more likely that she was either misinformed or just trying to get me to eat my carrots.

The internet now gives me most of my info instead of my mom, but finding trustworthy information on the web can be difficult, especially when it comes to health-related topics like Huntington’s disease (or the risks of a carrot deficiency).

I’ve found Huntington’s Disease News to be a trustworthy source, so I’m excited to add my voice to the site with my new column, “Gene Positive.”

My name is Steven Beatty, and in this column, I will share my journey and experiences as a member of the Huntington’s disease (HD) community. That’s right, not only am I writing about the community, I am also a member.

In 2015, I underwent genetic testing for HD. My dad’s side of the family tree was haunted by the gene mutation responsible for the illness. At that time, it had already reared its ugly head at two of my uncles and my grandmother. By the time I was undergoing my testing, it was showing signs of awakening within my father.

I knew from previous studies that if a person had the mutation, each of their offspring would possess a 50 percent chance of inheriting it themselves. That meant that I would have a 50 percent chance.

A coin toss. I was terrified.

“It’s not the result we were hoping for.”

That’s the line I heard from my genetic counselor. It was probably the most understated comment I had ever heard in my life. I was gene positive. With the toss of a coin, my life was completely changed. It’s not only my life but also my two sisters’ lives, as they were now considering their own coin toss. (One is gene positive, while the other is negative.) Not to mention my nephew. My kids.

There are moments in a person’s life that stand out as being paramount. Moments that send life heading down an unexpected tangent. My genetic testing experience was one of those moments for me.

Although Huntington’s disease runs in my family, I was feeling very alone. My wife and I had moved to a more rural area away from our families and support system. That, combined with the rare frequency of the disease, contributed to the isolation.

I reached out to the Huntington Society of Canada (HSC) to search for support in the form of a group or people local to my area. It turned out that the closest chapter was an hour and a half drive away. I was able to meet with a social worker, but other than that I was on my own.

Over the years since my genetic testing, things have changed a great deal. I have become much more educated about Huntington’s disease and all the exciting research and science going on right now. This knowledge has been critical in my journey to accepting life with HD. Knowledge is power. Knowledge gives me control.

I no longer believe that doctors handed me a “death sentence.” I no longer think that I won’t be around to see my kids grow up.

Another change is my connection with local members of the Huntington’s disease community. I figured that if there was no chapter in my area, then why not create one?

For the past couple of years, I’ve been putting together a group of local people to form an official HSC chapter. I have located other families through local news, social media, and help from the HSC with emailing.

Our young group has already begun organizing fundraising and awareness events. We support each other — both gene-positive individuals and their caregivers — as we move through our HD journeys. This experience has been one of the most rewarding of my life.

This community of people has become so integral to my quality of life and I cherish it immensely.

The few short years since my genetic testing have been full of emotional highs and lows. I know the roller coaster will continue, but I no longer feel alone on the ride.

I don’t want you to feel alone either.

As this column moves forward, I will write about my fears, tears, and moments of happiness. I will endeavor to share with you all those highs and lows as I experience them because I know you are experiencing them as well, whether as a gene-positive individual, a caregiver, or a friend.

Welcome to “Gene Positive.”


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Bonnie Boland avatar

Bonnie Boland

Steven is my nephew and I give him a lot of credit for the book he wrote as well as all the news and views pertaining to HD. I sincerely hope that his son and daughter do not have the gene. I am so happy that Steven's wife Michelle stands with him and has input in this issue as well.

Well done Steven.

Steven Beatty avatar

Steven Beatty

Thanks Bonnie, I appreciate the kind comment!

Joy Shadid avatar

Joy Shadid

My husband started changing about ten years ago. After 36 years of marriage I knew him well and within five to six years he was clearly not the man I had married.
After many manic episodes and lots of rage and me leaving him not knowing what was wrong, he was finally diagnosed with HD. His dad had been diagnosed but not until his 70’s.
My husband had to retire and us on disability now and doing better with emotions. We are together and I will be his caretaker for the rest of his life. Right now things are good and we cherish the good days we have.
Our fears are for our children and grandchildren. My husband’s siblings do not want to be tested. I think as parents in our sixties we need to let our children know if they could possibly carry the gene. It’s their choice though.

Steven Beatty avatar

Steven Beatty

Hi Joy,

Thanks for the comment, I appreciate it very much. I'm sorry to hear that HD took away the man you married, but I'm glad to hear that things are good right now and you are cherishing the good days. That's so important, isn't it? I'm really scared for my kids too, but at the same time, I read about all the advances in science and research and all the studies that are coming along so well and it gives me comfort. So, with your husband, it was his anger that was the initial symptom you were seeing at the time?

Bonnie Boland avatar

Bonnie Boland

Steven, what age bracket can you get Natalie and Evan tested?

Steven Beatty avatar

Steven Beatty

Hi Bonnie! Doctors won't test a child unless it's suspected the child might have juvenile onset HD. If there's no reason to suspect symptoms in a child, then testing won't be ordered until the kid grows up and turns 18. After turning 18, the person can then make their own informed decisions as an adult. Thanks for the question!

Carol Gregan avatar

Carol Gregan

Hi Steven,

Our daughter Kellie was diagnosed with Huntington's Chorea back in Sept of 2020. Kellie was adopted & HD ran in the maternal mothers family. We were told back in 1975 that we shouldn't worry as by the time Kellie would have symptoms there would be a cure. Kellie was only 4 weeks old when we adopted her & we certainly weren't going to give her back.
Kellie is in the research department at UCSD in La Jolla California. She just completed a clinical trial study & will no longer be taking the trial medication. We will continue on with the Research program. We had no idea of what was to come during these last few years. Our hearts go out to all the people we have met at support groups. So much work to be done - I pray that we will continue to work on a cure or a treatment that will help all . Just started reading your book "In-between Years" very informative. Wishing you & your family the best !


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