Huntington’s Disease is a rare, inherited disease https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/
Links to an external site. https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/
It causes slow degeneration of your nerve cells, resulting in symptoms such as:
● Difficulty moving your eyes
● Difficulty with speech
● Poor balance or poor motor control
● Lack of awareness of your surroundings or actions
● Difficulty learning
● Difficulty prioritizing tasks or getting stuck in a thought or action
Once the symptoms show, the patient will only live about another 10 years, with the symptoms continuing to worsen over time. It is a horrific and terrible disease
It is an autosomal dominant disorder, so having just one copy of the gene means you will get it. The biggest problem? The symptoms don’t show up until AFTER you have kids (usually around 30-40). Which means…you won’t know if you have that copy of the disease until after you potentially passed it to your children
Nancy Wexler https://en.wikipedia.org/wiki/Nancy_Wexler
Links to an external site. https://en.wikipedia.org/wiki/Nancy_Wexler
‘s mother was diagnosed with Huntington’s Disease at the age of 21. Watching the struggle her mother went through while fighting this disease, Nancy Wexler devoted her life (and her PhD) to the research of Huntington’s Disease and it’s treatment. She led the research and the lab that ultimately discovered the gene responsible for the disease (huge breakthrough!), along with most everything else we know about the disease and treatment for it. She has vastly improved the lives of every HD sufferer today. She is a literal hero in the field, and I have a ton of respect for her
Here’s the part I want you to think about:
When Nancy Wexler was young, she faced a very difficult ethical dilemma. Her mother was heterozygous for the HD disease, so Nancy Wexler had a 50/50 chance of having the disease herself, and then possibly passing this disease on to any children she had.
There was (at that time) no way to know for certain if she had the disease. So…should she forbid herself from having children to protect them from the horrors of this terrible disease? Just in case?
What would you do if you were in her shoes?