When Chrissy Land tested positive for Huntington’s disease over two decades ago, she had her entire life ahead of her. She was living in upstate New York and working as a fingerprint examiner. Her hobbies included riding her motorcycle, swimming and fishing in her free time.
Chrissy decided to get tested for the gene that causes HD when she was 23 years old, after her father started to show symptoms and was diagnosed with the rare disease. She was nervous about the outcome but felt she needed to know. She remembers driving back to her hometown in Ohio to get the results from the doctor months after the test: “It was an eight-hour drive by myself and I cried the entire time,” Chrissy says. “I was thinking if I want kids or not – I didn’t want my kids to have Huntington’s.”
Now, 24 years later, Chrissy is living in a beautiful beach town in Florida with her mom and sister, and gets together often with other HD patients she connected with on Facebook. She started to experience symptoms in the last 8 to 10 years, including memory loss, lack of balance and chorea in her hands and feet, as well as depression and loss of sleep. To help cope with her memory loss, Chrissy says she writes everything down and keeps notes in order to remember important events.
Chrissy actively participates in research and plans to donate her brain after she passes, just as her father did. She has hope for people who are diagnosed with the disease in the future.
“It is a real illness. People just don’t understand it. They haven’t heard of it yet. We just want to spread the word and let everybody know we are sick and we’re not out of our mind crazy,” she says. “I think for the next generation to come, there will be a cure. I think that’s what I’m most excited about – helping find a cure.”