It might start with your pinky finger trembling or forgetting your computer password. The smallest things make you angry.
You tell yourself this happens to many others, but it gets worse year by year. You become more and more forgetful until you start to lose your memory altogether. Your arms and legs begin to have minds of their own, and you just can’t control which way your head moves. Your mood swings become more severe until eventually, you lose your mind completely.
These symptoms worsen as you lose the ability to control your mind and body. Eventually, a complication claims your life.
This is a reality for people with Huntington’s disease, a genetic disorder that degenerates brain nerve cells.
Huntington’s disease, which remains incurable, is a progressive brain disorder caused by a faulty gene that is passed down through families. Affecting one out of every 10,000 Americans, the symptoms for Huntington’s disease normally emerge in adults between the ages of 30 and 50.
Huntington’s disease affects not only the person diagnosed but the people closest to him or her.
“It’s a disease of the family,” says Fred Taubman, director of communications for the Huntington’s Disease Society of America. “It impacts worse than normal diseases, like cancer.”
Ashley Young’s family has been haunted by this disease for three generations. Ashley’s grandfather, dad and older brother have all been diagnosed with Huntington’s.
And Ashley has a 50/50 chance of inheriting it. But she won’t let the prospect of the disease consume her.
A little before Ashley was born, her grandfather passed away from complications from Huntington’s disease. After her grandfather passed away, her dad disappeared, falling to a life of drugs and abuse.
Depression, the most common mental symptom of Huntington’s disease, may sometimes eventually lead to substance abuse.
“My grandpa passed away, and my dad wasn’t really able to cope with that,” Ashley says.
With her father’s drug addiction plaguing the family, her mother decided to raise Ashley and her siblings on her own.
“You get to a point where you realize that you can’t make someone be who they’re supposed to be,” says Ashley’s mother Maggie Young.
For the rest of Ashley’s family, the absence of her father did not mean the end of Huntington’s disease in their lives.
Ashley’s 28-year-old brother tested positive for Huntington’s disease a few years ago. Her older sister has not been tested, and neither has Ashley.
Unlike her father, who currently is in the late stages of Huntington’s disease and has not spoken to Ashley in years, Ashley’s older siblings are still very much in the picture.
Her siblings stepped in as her surrogate parents, helping with everyday chores like picking Ashley up from school, helping her with homework and making her dinner.
“I was kind of like their little kid,” Ashley says. “I never felt alone or like I needed my father.”
With her mom working full-time to support the four of them, Ashley tagged along with her older siblings wherever they went. Most of her childhood days were spent by the pool, with her brother and sister playing water polo.
In order to make it easier on Ashley’s mom, she joined the 10-and-under water polo league at the same pool as her siblings.
“She just threw me into the program so that we would all be there, and she could just pick us up when she got off of work,” Ashley says. “It was just easier for her. And then I guess I just fell in love with it.”
In fifth grade, she was asked to play in a tournament with an elite team from Coronado, a town well-known for its great water polo players and coaches. Ashley and her family moved to Coronado so she could immerse herself in the sport.
The water polo community provided Ashley with stability — a constant in her life to escape the shadow of Huntington’s disease and the absence of her father. Her new team quickly turned in to her second family — for both Ashley and her mom.
Through water polo, Ashley’s self-confidence grew. The pool provided refuge from the looming threat of Huntington’s disease that riddled her family even before her birth.
The lessons from the pool aligned with the motto her mom swore by her entire life.
“Self-pity will never create success,” Ashley says.
Now a junior, Ashley hopes to continue playing water polo professionally as a driver in Europe after she graduates from Cal.
When her water polo career eventually ends, she wants to work with the Peace Corps, Amnesty International or Human Rights Watch. With a major in Interdisciplinary Studies and a minor in Peace and Conflict Studies, Ashley hopes to work somewhere that relates to her academic emphasis on globalization and consumer behavior, including marketing and social networking.
One day, she also hopes to settle down and start a family.
“I want to have a family and children and everything,” Ashley says. “I don’t think [the disease] is going to hold me back.”
But the threat of Huntington’s disease is always present. Everything she dreams of can slowly dissipate as her mind and body withers away from the disease.
But Ashley won’t dwell on the thoughts. She can’t, really — she has no time. With school and water polo in full swing, Ashley will eventually get tested when she has the time.
“I go through phases where I do want to be tested,” Ashley says. “But I know I’m going to wait until after college.”
Not everyone wants to get tested for Huntington’s. According to Taubman, a majority of potential Huntington’s disease victims don’t get tested — for some, the emotional toll is too much. Others just don’t want to know beforehand.
The Young family faced this dilemma about taking the test multiple times. Ashley’s brother took the test a few years ago, wanting to know his destiny. His 50/50 chance landed on the wrong side, forecasting a future with Huntington’s disease.
Ashley’s sister, who is pregnant at the moment, has not been tested, nor does she want to. She feels like knowing would not affect how she lives her life.
People who could potentially have the disease must go through mandatory psych evaluation to determine whether they are mentally prepared enough to take the test. Once they are ready, the doctors draw out their blood and look for the mutant chromosome that causes Huntington’s disease.
Even with the constant presence of Huntington’s disease, Ashley continues to live a normal life, determined not to surrender to what she cannot control.
The specter of the disease is not a daily thought process, but every now and then, it will pop into her head.
Instead of dwelling on the what-ifs of Huntington’s disease, Ashley is focused on the what-nows.
Water polo and school are her main focuses right now, and she’s working toward a professional water polo career overseas.
Any professional athletic career requires the mastery of the body; Huntington’s disease seizes control of the body. The irony doesn’t go unnoticed to Ashley.
But Ashley does not let the 50/50 chance hinder her future. She came this far already — she can go above and beyond.
“I am so blessed to be here,” Ashley says. “I am still in awe, that’s no doubt.”
For more information about the Huntington’s disease, contact the Huntington’s Disease Society of America at hdsa.org or at (800)345-4372.
Alicia Fong covers women’s water polo. Contact her at [email protected].