I don’t remember the exact moment I found out my dad had Huntington’s disease, or how I found out it was genetic. What I do remember is showing off, in high school biology, that I knew the Huntington’s gene was dominant in males. My reasoning was that my dad, his dad, and his granddad all had Huntington’s. I knew my two sisters and I still had a chance at getting it, but it wasn’t as likely. This, of course, is not true.
If you have a parent with Huntington’s disease (HD), whether you’re male or female, you have a 50 percent chance of inheriting the gene and developing HD.
Looking back, I clearly wanted to believe it was more common in men. I used that explanation as a coping mechanism to deal with the fact that, as a 14-year-old, not only was my dad dying, but he was dying from something my sisters and I might die from, too.
For those of you who don’t know what Huntington’s disease is, according to the Huntington’s Disease Society of America (HDSA), “it’s a fatal genetic disorder that causes the 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.” The HDSA website even notes that many describe the symptoms as a combination of having Parkinson’s, Alzheimer’s and ALS all at once. Those symptoms can include mood swings, depression, personality changes, slurred speech, the inability to think clearly, involuntary movements called chorea, and eventually the inability to walk, talk, and swallow.
The typical HD patient begins showing symptoms between the ages of 30 to 50, according to the HDSA, which worsen over a 10-25 year span. My dad was diagnosed in his forties and passed away two days before his 58th birthday. People with Huntington’s often die from infections, aspiration pneumonia, even complications from falling. My dad’s cause of death was cardiorespiratory failure, brought on by all the health issues surrounding his disease.
Although there are only about 30,000 symptomatic Americans currently living with HD, there are more than 200,000 who are at risk. To me, this at-risk reality is like being forced to live in no man’s land. The whole 50/50 thing is so definitely not definite. It’s unsettling knowing what my exact odds are and that they don’t lean one way or another. The odds aren’t against me, but they aren’t in my favor either.
People at risk don’t have to live in this in-between world.