In the fight against Huntington’s disease, a familial condition that can plague generations, each generation must pass on the advocacy baton to the next.
I feel as though I've started
my handoff to my daughter Bianca.
HD has profoundly affected my family in
multiple ways. My mother was diagnosed with HD in 1995 and died from it in 2006
at age 68. I tested positive for the genetic defect in 1999, and have been
racing against the genetic clock ever since. Bianca, thankfully, tested
negative in the womb in 2000.
At 57, an age when my mother had chorea
(involuntary movements) and severe cognitive loss, I am blessed to have
remained symptom-free. However, because HD gene carriers inevitably develop the
disorder, I know that, unless scientists discover an effective treatment, I
will someday become ill.
HD families must stick together to
confront the devastating symptoms, caregiving demands, and difficult challenges
the disease brings, but it’s by no means easy.
Avoiding the denial that prevents family solidarity and feeds ignorance about the disease,
my wife Regina and I have revealed to Bianca at appropriate moments how HD has
impacted our family. We have done so gradually but always honestly. Often, we
spoke about HD in response to her questions. (To read more, click here and here.)
Gene Veritas (aka Kenneth P. Serbin) with daughter Bianca and wife Regina (2016 family photo)
A
biology assignment
Now 16, Bianca is a healthy and vibrant
high school junior. She has frequently read this blog and over the years has
participated in several fundraising events for the San Diego chapter of the
Huntington’s Disease Society
of America (HDSA-San Diego).
Her gene-negative status means that the
threat of HD stops with me. Of course, she is concerned about my health, and
she is deeply saddened by the plight of juvenile HD patients.
She has volunteered for HDSA-San Diego.
Last week she worked on an assignment for
her high school biology class titled “A Day in the Life: A Study of Human Genetic Disorders.” From a list of diseases, she chose HD. Drawing on medical and
scientific sources, she wrote a four-page summary of the biology of HD,
symptoms, its rare status, age of onset, and potential treatments.
Life
with HD
For the required creative component of
the assignment, Bianca wrote an imaginary patient journal titled “Life with Huntington’s Disease,” from
the perspective of this blog, her conversations with me, and her observations
over the years.
Bianca captured the sadness, anger, and
fear associated with HD. In one excerpt, she wrote:
Today was a bad day. It has been hard
lately to ignore HD. I wish I could say I don’t think about it all the time, but I do. Especially now
that Mom is getting worse. She can barely walk at this point. Dad helps her eat, shower, use the
bathroom, and dress herself. It’s hard for me to see my mom act in a more childish manner than my
three-year-old daughter. It’s hard for me to see my mom this way because I know that I will
one day experience the same thing. I feel exceptionally lonely nowadays. I know others who
struggle or who have struggled to take care of someone with HD, but I somehow feel like my
situation is unique, somehow worse than everyone else’s.
However, Bianca also portrayed the
strength and hope of HD families and advocates, writing:
Perhaps the best part of having HD is
getting to meet so many people who are involved with the cause. The Huntington’s Disease Society of America is one of
the most supportive groups of people I have ever worked with. Few know
the struggle that accompanies this disease. It’s nice to be able to talk to people who do,
people who have lost loved ones, as I have, to this horrible sickness, people who, like me, are at
risk.
Bianca Serbin (photo by Gene Veritas)
Honesty
and family solidarity
Reading Bianca’s words, I know that HD is forever seared
into her consciousness.
I was deeply moved by her decision to
write about our family’s struggles with Huntington’s. I am very proud of her.
The experience reinforced the necessity
of accurate, patient, and, above all, honest communication within Huntington’s families.
In our conversations last week many
powerful memories came to the fore. Bianca told me that one of her earliest
recollections was of us visiting my parents’ home
in Ohio (she was three) and seeing my father and me help my mother after she
fell on the floor.
Bianca learned from me last week how the
disease could potentially affect other members of our extended family.
As I looked at her, I felt an immense
sense of relief that she is HD-free. I also felt wonderful anticipation: in
less than a year she will be applying to college.
‘Don’t worry for now’
At the conclusion of our conversation the
night before Bianca turned in the assignment, we discussed the fact that the
greater the genetic defect (gene expansion), the earlier the onset.
We inevitably focused on my potential age
of onset, ranging from the late forties to the late sixties.
“Hopefully I will
get sick only in my late sixties,” I
told Bianca.
“Or maybe you’ll get sick even later – or
not at all!” Bianca responded
optimistically.
We discussed the hope of clinical trials.
A bit later, determined not to let all
this hinder her life plans, I told her gently: “Don’t worry about HD
for now. That’s something off in
the future.”
