How a crucial minute can convey the effects of Huntington’s disease
Preparing for the Rare Across America event that'll connect us to Congress
What do you say — in under a minute! — to someone about a rare disease? How do you convey the needs of people with Huntington’s disease (HD), knowing how terrible it is because you’ve spent years watching what it does to people you love? How can you explain that pain, but keep it light (and with your emotions at bay)?
Those were questions my beloved wife, Jill, brought up when we spoke in advance of an opportunity to meet with members of the U.S. Congress about HD.
In 2018, Jill was diagnosed with Huntington’s. The next year, we found out our daughter was also gene-positive for the disease. We experienced an unexplainable amount of sadness, but the news spurred us to advocate for those affected.
As part of our wish to be involved with helpful groups, Jill and I joined one called EveryLife Foundation for Rare Diseases, which will be holding an event called Rare Across America 2023 on Aug. 7-18. It lets members of the rare disease community meet with their area’s representatives and senators to educate them on issues most important to those who have these chronic conditions.
Part of what we’ll be sharing is the story of Jill’s disease and how Huntington’s has affected her family.
Although Jill wants to share her experiences, the concerns she shared with me were understandable. So one by one, we tried to answer each question.
What do you tell someone about a rare disease in under a minute?
To approach the question, I asked, “What’s the biggest thing we want them to know?” We came up with this response.
Huntington’s is like having Parkinson’s, ALS (or amyotrophic lateral sclerosis), and Alzheimer’s simultaneously. It takes years to fully manifest and ends up robbing patients of their minds, bodies, and spirits. The person with HD suffers, along with family members who watch the slow and relentlessly cruel decline. It saps families financially and emotionally. No medicine exists to cure it or to stop it from taking over.
And those who are gene-positive have a 50% chance of passing the mutation to each of their biological children.
How do you convey what people with HD need?
Those who are gene-positive for HD eventually lose the battle. Their children may or may not have the gene, but after watching their loved one suffer from the disease, they now know the cost of finding out if they’re positive.
Families need a protection that only the government can provide: They need to be able to have the genetic test without the results becoming a “preexisting condition,” which can make it extremely challenging for the family to get life or long-term care insurance.
They also need the process for Social Security Disability Insurance to be enforced. HD doesn’t show physical symptoms until much later in its course. By the time they are visible, HD will have wreaked havoc on the person’s mind.
How can you explain the pain it’s caused, but try to sound upbeat and not too emotional?
Jill is a private person, but I know she’ll find the courage to share her story with members of Congress in August. It’s a story of love and loss, a story of hope and an unshakeable spirit. I can only pray she lives long enough to see the changes she advocates for become reality.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.