Did you get Dad’s green eyes? How about Mom’s curly hair?
It’s always interesting to see how children turn out – who they will favor and what they will look like.
All lighthearted musings for most of us.
What if there was a 50/50 chance you could have inherited an incurable, always fatal disease from one of your parents?
What if that parent didn’t clearly show anything very out of the ordinary and didn’t even know they had that disease?
Would you even want to know if you inherited it?
That’s just a few of the endless questions family members of loved ones with Huntington’s Disease (HD) ask themselves.
With approximately 41,000 Americans symptomatic for HD and 200,000 at risk of having inherited the disease, there is a chance you might not know much about this disease.
Because of two of my new author friends, Sarah Foster and Lori Jones, my eyes have been opened to the poignant minefield of how this disease can unfold in individuals and in the families that surround them.
Reading this quote from Spared: A Memoir of Risk and Resolve by Lori Jones, you can begin to appreciate the weight of an HD diagnosis:
“Often called “the world’s cruelest disease,” according to the Huntington’s Disease Society of America, HDSA, Huntington’s disease is described as, “having ALS, Parkinson’s, and Alzheimer’s simultaneously.”
This article from HDSA contains part of Sarah Foster’s story:
Sarah Foster has written two books, Me and HD (2015) and This Is Me Smiling (2025). In both, she holds nothing back in recounting her decision to get tested for HD; how her diagnosis confirmed her mother’s own – untested – diagnosis, and the ever-changing landscape of living with HD.
When Sarah shared this article from the BBC:
I joined the jubilation!
To quote:
“An emotional research team became tearful as they described how data shows the disease was slowed by 75% in patients.
It means the decline you would normally expect in one year, would take four years after treatment – giving patients decades of ,”good quality life,” Prof. Sarah Tabrizi told BBC News.
The new treatment is a type of gene therapy given during 12 to 18 hours of delicate brain surgery.”
Clearly, with this lengthy brain surgery, treatment will be incredibly expensive – but there now is a treatment they can work with!
Yay, science!
Yay, to funding researchers!
If you know of someone with HD or not, both author’s stories deserve to be read and understood because their stories are a part of our collective humanity.
In health –
Deidre





















































































