Huntington’s Disease Awareness Month

You may have seen #LetsTalkAboutHD trending on Twitter – but what is HD and why is it trending? Let me first answer that in one sentence – May is Huntington’s Disease (HD) Awareness month, and we’re here to help spread this awareness.

Have you never heard of HD before reading this?

You’re not the only one. I even did not know about the disease until recently becoming good friends with someone who lost his father from the disease. Out of pure coincidence, a few months after this friendship started, I was in the library looking for a good book to immerse myself in. I ended up picking up Inside the O’Briens by Lisa Genova (yes, the same author of Still Alice). In the book, the father is diagnosed with HD, without having heard of it before. The book portrays the family’s struggles, as children of parents who have HD have a 50/50 chance of inheriting the mutated gene. If you have the mutated gene, you will eventually get HD. Scary, right? It’s not just a story though, it’s real life, as my friend knew firsthand.

Now, I am not the expert on HD nor do I have any firsthand experience with the disease. But as I learned more and more about this disease, it broke my heart. It had led me to chatting more about my friend’s obstacles with him, and what he had to go through not only seeing a disease change his father but also living with the chance that he himself may have the mutated gene and eventually develop HD as well.

According to The Huntington’s Disease Society of America, the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease, HD “is a fatal genetic disorder that causes progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.” Currently in the United States, there are about 30,000 symptomatic people and more than 20,000 who are at-risk of inheriting the disease.

What makes all of this even worse? Symptoms tend to usually appear when a person is between the ages of 30 and 50 years old – so young! These symptoms then worsen over a span of 10-25 years, weakening the person. People’s abilities to talk, walk, and reason are all affected. Personality changes can also occur.

---

A 50/50 Chance

Now think about it – if your parent has HD, not only do you have to see all of this happen to him/her, but you also have to live knowing that there is a 50% chance the same thing you are witnessing will happen to you. Could you imagine? I can’t. But it’s a reality, and it was a reality for my friend Dennis Holden of Dennis Has A Podcast.

Dennis was barely a teenager when he had a 50/50 chance of having the same fate of his father – years of suffering before succumbing to HD.  However, even from that young teenage age, he knew that he wanted to go through genetic testing and find out that he had the disease; not everyone decides to go through with this testing, and for many people, it’s not an easy decision to make. But Dennis knew he wanted to find out, but he unfortunately had to wait, as you need to be 18 to be tested, and you need to undergo psychological evaluation.

That means Dennis went through all of high school not knowing whether or not he would end up suffering the way that he was watching his father suffer. “I got through high school, somehow I guess — I repressed most of it,” he recalls, “And, it was something always on the forefront of my mind. I had depression, and mixed emotions in ways I couldn’t express.”

Take a moment and think back to your high school days. Could you imagine this? Being a teenager is hard enough at it is with all of its struggles, its hard enough when you have a sick family member at home, but on top of that not knowing whether or not you’re going to one day inherit the same fate? That is a lot for anyone, let alone a child.

All while this was going on, Dennis’s father was moved to a nursing home, making him feel even more helpless. When his father was at home, Dennis at least felt like he was doing something, whether it was as simple as making mac and cheese for him and his father to enjoy together. But once he was put into the nursing home, Dennis felt like he wasn’t doing anything anymore, that all he could do was empathize.

He then went on to college, still not knowing if he had the gene or not.

I am so proud of my friend Dennis for getting through all of that. And I am so proud for all the other children out there who get through all of it as well.

I am very, very happy to say that after spending half a semester at college not knowing, Dennis came home and got tested – finding out that he did not have the gene. Dennis would not get the disease, and would not have to suffer the same fate as many others, including his father. On top of all this? The line ends with Dennis; he cannot pass on HD.

But despite all of this good news, Dennis felt survivor’s guilt. “I was never able to face my father knowing he had to go through that alone, which, sadly, was exactly what I indirectly, did.”

HD is a disease that not only affects the person suffering from it, but affects all of those around him/her. It is a horrible disease that more people should know about. Over the years, the awareness does continue to grow, as it’s being discussed as plot points on House MD, Scrubs, and other popular shows of past and present.

I urge you to take some time to read up on HD. And if you know someone who is suffering from HD, or is the child of someone suffering from HD, I urge you to be there for them.

There is one important thing I want to leave you with – a quote from Dennis that I could not do justice if I put it into my own words, “What HD can take in physical and mental gifts, it cannot take away in spirit. My father was a kind, warm, funny man, who always, somehow, had a smile on his face. I don’t want anyone to have to go through what my father went through – that’s my reason for fighting.”

About the Author

---