By Matthew Santamaria (firstname.lastname@example.org)
Brittany Passerell is twenty-two years old. She will be graduating from Cleveland State University with a bachelor’s degree in psychology. Once she graduates, her future is still unknown.
Brittany is at risk of inheriting Huntington’s disease (HD).
HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
In December of 2016, her mother was diagnosed with HD. Fifteen years before she tested positive, her doctor informed her that she was safe from the disease because her mother was forty years old and did not develop symptoms yet. That information is false as symptoms can appear between the ages of thirty to fifty.
As the years went on, she started to develop symptoms of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
“There are many cousins, aunts and uncles who have HD in my family— most have already passed away or we haven’t stayed in close contact with,” said Brittany. “My maternal grandpa genetically passed down HD to my mom, and he died only a few days after I was born. Living with HD was very different back in the 1990s than it is today.”
Her grandfather was being treated at a county nursing home and was not receiving the best treatment. Because of this, her grandmother decided to retire early and be his full time caregiver. Her grandmother and her four daughters took care of her grandfather until his last days. At the age of fifty-eight years old, he passed away.
“I think it is important for people who have tested positive to not compare symptoms to others with this disease,” Brittany explains. “My mom and her sisters have shown different signs of progression with HD. Living a healthy lifestyle and maintaining a positive attitude help tremendously when you’re living with or know some with HD.”
Brittany knows her chances of a positive diagnosis of HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
“I would like to get tested, but it would have to be when I am in a good mindset,” she explains. “I also want to be done with school, and have insurance of my own. I want to be financially secure and emotionally prepared, but how prepared can you really be? I want to enjoy my life to the fullest— and I’ll do that whether my results are positive or negative.”
As Brittany does not know what her future holds, she is helping her mother complete simple tasks and treasures family time. The tasks that she assists her mother with include styling her hair, painting her nails, and cooking. Going shopping is great and healthy for her mother because it gets her out of the house as she cannot drive anymore.
“Since she doesn't drive anymore, it is very important to take her out during the week to keep her active and social,” said Brittany. “We talk and spend time together. My mom is funny, bubbly, kind, loving, and caring. Although she has trouble swallowing sometimes and can’t complete daily tasks like she used to, she gets along very well. We thank God for her progress in maintaining good health.”
Her parents just celebrated their 37th wedding anniversary and have supported each other through the good and bad. Through their family history, they know it is not all sunshine and rainbows when it comes to HD.
“HD is a very difficult disease to live with,” said Brittany. “We see people that we’ve know all our lives act in ways in which we wouldn’t expect or haven’t seen before. It is scary, and a lot of people don’t understand what you are going through.”
Through HDSA’s Northeast Ohio Chapter, she has taken the initiative to go to HD youth support groups. She has met amazing people through the support groups and education day as she looks forward to contribute more directly with HDSA in the future.
“To anyone living with HD, you are so strong and brave. Keep on fighting! For caretakers and supporters of family and friends who have HD, thank you— your kindness and support mean the world to families like mine.”
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at email@example.com.