What is HD? PSA Guest Post
Lindsay Groot, 29
May 2, 2016
Huntington disease (HD) is devastating. Over time, your brain breaks down and you start seeing symptoms that are behavioural, cognitive and emotional. My grandmother died from the disease, my father is symptomatic, and I have the gene – which means I will develop symptoms down the road.
Both sides of my family are really supportive. We’re from a small rural community, so they’ve all seen what my grandma and grandpa had to live through and they’ve all seen the struggles of my parents. And although we have support, there is a lot of strain and heartache that goes on behind closed doors that isn’t openly talked about.
My parents helped us go through in vitro fertilization (IVF) to make sure our kids are free from this disease. Now we have a little girl who doesn’t have the Huntingtin gene.
IVF isn’t an easy process to get through for so many reasons — financially, with all the hormones, time off work, and pressure. It’s also not free or cheap. We were fortunate that our first implant worked because the success rate is only about 1 in 4. It definitely puts a strain on your relationship with your spouse and anybody in your life. But there’s nothing that makes me happier than looking at my daughter and knowing that she’s gene-negative. It kind of makes me forget about my own diagnosis.
My greatest fear is that I’m going to die the same way my grandmother died, dwindling away into someone we could barely recognize, totally dependent on care takers. I hope there is a cure in my lifetime, or at least some treatment that can prolong the better years before the symptoms really set in.
Getting involved in clinical trials is the only way we will stop this disease from passing on and give us the chance to find a cure. I’m going to participate in clinical trials as soon as I qualify — it’s the only way that research is going to progress and the only way we are going to stop this disease.
To see Lindsay’s video testimonial, click here.
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Huntington disease (HD) is an inherited neurological disorder that is currently fatal and incurable. It creates emotional, cognitive and physical symptoms. To learn more about HD and how the Huntington Society of Canada supports families affected by the disease, visit www.huntingtonsociety.ca/psa-campaign.