It is graduation time in America. From preschools to high schools, community colleges to ivy-walled universities, young men and women are donning caps and gowns and celebrating academic achievement. New rites of passage await -- both academically and socially -- and for most graduates, the future holds endless promise and youthful optimism.
Unless you come from a family affected by Huntington's disease.
Huntington's disease (HD) is a hereditary, neurological illness that is relatively rare. According to the National Institutes of Health, it affects approximately 30,000 Americans, roughly the same incidence as ALS or cystic fibrosis, both of which were better known long before ice buckets and roses.
Because of the way Huntington's disease deteriorates the brain, it slowly robs its victims of the ability to walk, talk, think and reason. Many describe HD as Alzheimer's and Parkinson's diseases simultaneously, perhaps with a bit of multiple sclerosis thrown in.
If you come from a family affected by Huntington's disease, graduation from high school or college often means facing new and very difficult decisions. For some it means foregoing higher education to stay home and care for a parent affected by HD. For others it might mean providing financial support or choosing an occupation that would be most forgiving to the logistical support of a family taxed by generations of a disease.
Time after time, dreams are deferred. Practical considerations regarding insurance, disability benefits, and flexible schedules are the priority for the short-term... and the long-term. Because if you come from a family with Huntington's disease and one of your parents has or has had it, you have a 50:50 chance of having inherited the disease.
So let's start again. Happy graduation. Do you want to know your genetic future?
At age 18, if one of your parents has HD, you are eligible to be genetically-tested for the mutant gene that causes Huntington's disease. Your chance of having the gene is the equivalent of the flip of a coin, and if you have the gene, you will develop HD. It's not an "if," it's a "when."
Approximately 200,000 Americans from HD families are living at-risk for the disease and face the decision of whether or not to undergo genetic testing. The vast majority of those faced with this decision choose not to go through testing, in large part due to the lack of treatments for the disease.
Presently there are no therapies that can slow the progression of Huntington's or change its outcome. Symptomatic onset of HD typically occurs in a person's mid-30s, and over the next 10-15 years, they slowly lose their independence and ultimately their life.
And of course, they may have passed it to their children who face the same coin-flip of fate.
Huntington's disease impacts every member of the family in insidious and heartbreaking ways. It is truly the worst type of inheritance. Because of its rarity, medical expertise and resources are often difficult to find. Because of its biological complexity, it is hard to treat and currently impossible to stop. Because of genetic legacy, many families bear a burden of shame, guilt and fear of discrimination.
At the Huntington's Disease Society of America (HDSA), we know that no one fights Huntington's alone. Our founder Marjorie Guthrie, wife of renowned folk singer Woody Guthrie who died from HD complications in 1967 when he was only 55 years old, knew this firsthand. She recognized that families affected by HD were the ones with the power to replace the loneliness and fear with help and hope.
Nearly 50 years later, HDSA's advocacy, education and research programs are making the decisions of Huntington's disease families a little easier. Where to find care, how to raise their voice, and what promising scientific advancements to celebrate are all easier questions to answer.
The question of genetic testing, however, is not. On Monday, June 1 at 9/8 central on HBO, one brave woman confronted this question in the award-winning film The Lion's Mouth Opens, a short documentary about actress and filmmaker Marianna Palka's journey into genetic testing based on her family's history of Huntington's disease.
It's a powerful window into the lives of families affected by Huntington's disease, but more importantly, it makes you think about the decisions you make and their impact on your future, not just during graduation season, but every day.
To learn more about the fight against Huntington's disease and to get involved in providing help for today and hope for tomorrow for HD affected families, visit the Huntington's Disease Society of America at HDSA.org. At HDSA, family is everything.
This op-ed is a part of a Huntington's Disease Awareness Month collection and in collaboration with The Lion's Mouth Opens, premiering on HBO this June 1 at 9/8c and available on HBO Go and HBO Now.