Hi, I’m Ashley Harmon. I am 21 and have Juvenile Onset Huntington’s Disease. I am an adult, not a child, but yet, in many ways, I feel stuck in a unique and difficult place between the two because of this disease.
I have symptoms and issues that JHD kids more typically experience, like the internal itching, tightening muscles, and being hot. I also have symptoms commonly experienced in adults, like chorea, trouble swallowing, and memory issues.
I’m an adult who can consent to clinical trials, but I may not qualify to participate or even be eligible to try certain drugs because my disease involves the juvenile form. I’m stuck in the middle.
I have experienced the beginning years of college, going out to parties and meeting new people, but then things started falling apart because of this disease. So, unlike a child, I know what those social activities are like and desperately want to be part of them again, but the disease makes it really hard to do them anymore. My poor judgment, impulsivity, and short-term memory issues put me more at risk for harm. Unlike adults, who usually have a later disease onset than mine, they have experienced their 20s and 30s, maybe even met someone, married, and had kids before the disease got in the way. They have moved on from their 20s, but I’m in them and not able to really be a part of them. I know that I will have further decline and have little to no access to possible treatments without things changing.
In high school, I was a cheerleader doing stunts, and I went to the gym to get stronger and work on gymnastics to be a better athlete. Today, I’m going to the gym to work on the muscle tightness to give me relief from the pain and have as much flexibility as possible for as long as possible.
I had an apartment in college by myself for one year. I did my own grocery shopping. I drove. I worked. Now, I live with my parents. They have to drive me. I’ve spent all of my hard-earned money in a short period of time. I feel like a kid again, having my parents give me money. They have to drop me off and pick me up. I’m stuck at home with them most of the time. I want to be independent and by myself again. But I can’t.
I really want to work but can’t hold a job anymore. I get so itchy, and though meds help, I still have periods of itching and must lay in a bath for long periods of time to feel better. It can strike at any time. Wearing anything around my waist makes the itch worse. I get frustrated and agitated that I can’t be normal.
I feel stuck in the middle with regard to my care. It’s not a spouse or partner who helps me; it’s my parents. I’m not a young child who needs her mommy. I’m an adult, but all I have are my parents, to love and care for me. What 21-year-old wants to spend that kind of time with their parents???
All my challenges make it hard to make and keep friends. Friends have moved away for college, who I rarely see anymore. People who meet me now don’t always take the time to get to know me; they seem to focus on the disease and not me. I am more than my disease, but as time goes by, the disease steals my light. I am doing my best to manage. I want to have a chance to participate in trials so I get a chance to improve. Even if it doesn’t work, maybe my participation will help scientists learn more.