Huntington's Isn't Rare...It's Ignored

A short monologue about how Huntington's disease is being ignored.

Episode Transcript

Speaker 1 (00:16):
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, You
are loved. Hello, and welcome to We Have a Voice Radio.

(00:43):
My name is Kevin Jess, and I'll be your host tonight.
I want to tell you something uncomfortable, not because I
enjoy making anyone squirm, but because silence is expensive, and
the bill keeps arriving in the mailbox. Is a families
who never ask for this. We call Huntington's a rare disease.

(01:05):
But here's the truth. We never sit with long enough.
Rare has become a permission slip. It's the word that
lets the world look away. It's rare, we say, and
then the emails don't get answered, the studies don't get funded,
the clinics get booked out six months, and the caregivers
learn how to cry quietly so they don't wake the

(01:28):
person they're trying to save. And that's the show. Thanks
for coming, No, not really tonight. We're staying in it
because Huntington's isn't rare, it's ignored. Let me start with
a picture. A mom sits at the kitchen table long
after midnight. The house is finally quiet. There's a stack

(01:50):
of pamphlets with glossy smiles, a my chart portal blinking
no new messages, and beside it a handwritten list tomorrow.
It has three items. One call the neurologist again. Two,
find a support group that isn't full. Three figure out

(02:12):
how to keep hope alive without lying to the kids.
She's not counting prevalance. She's counting minutes of sleep she
can trade for a sliver of control. This is the
first tell that rare doesn't fit. The line of people
at that kitchen table stretches around the block. We just

(02:32):
don't see the line because everyone's doing it. At two
seventeen am, alone in the quiet. If a disease screams
but no one is listening, how loud is it? The
answer is loud enough to break your life, and somehow
still not trend. We live in an era where a

(02:53):
celebrity's haircut generates a news cycle. Meanwhile, an entire community
is rehearsing green in advance. Because Huntington's teaches you to
mourn before the funeral. That doesn't trend. It doesn't get
a press release, it barely gets a pamphlet that isn't
out of date. Call it what you want, rare, orphan, niche,

(03:16):
or niche. I'll call it what it is forgotten on
purpose because remembering is expensive. Rare condenses a room into
a closet. It turns a crowd into a corner case.
It makes a budget committee feel noble for offering crumbs,
and if you're inside that closet, the air gets thin fast.

(03:40):
When families ask for better access to trials, the answer
is there aren't enough seats. When caregivers ask for training,
the answer is we don't have a program for that.
When a young adult asks whether to get tested, the
answer is a brochure and a waiting list. Say it plainly.

(04:01):
The rare disease label has become a social technology for
rationing compassion. Huntington's is the disease that punishes visibility. People
hide diagnoses at work because they need the insurance. They
hide it in dating because they want a future. They
hide it in family trees because they're tired of being

(04:24):
reduced to a probability. You can feel the anti spotlight everywhere.
A parent says, don't tell Grandma till after Christmas. A
spouse says, let's not tell the kids yet. An employer says,
let's wait and see how this affects performance. Everyone is waiting. Meanwhile,

(04:45):
the disease isn't there's a glitch in the systems in
the system. So here's a riddle. What happens when a
disorder is complex, progressive, and guaranteed by genetics, but the
support systems around it behave like it's optional. The answer
is you get a community living in hard mode while

(05:05):
the world plays on easy. Mode. Means you schedule life
in the gaps between appointments. It means you negotiate with
side effects that would flatten most people for a week,
and you do it before breakfast. It means the person
you love is still in there, and it's your full
time job to advocate so they aren't treated like a diagnosis.

(05:28):
Wearing shoes. Huntington steals twice. First, it steals inside the
person you love, their speed, balance, memory, ease, their impulse control,
the lightness in their laugh. Then, while you're trying to
hold what's left, it steals outside the job that stops

(05:52):
calling the friends who don't know what to say the
social invitations that quietly dry up because your life looks
looks complicated. It's a double loss, and the second one
is preventable. So what would it look like if it
weren't ignored? So let's design the world backward from dignity.

(06:15):
It looks like a clinic where a first appointment isn't
a three month wait. It looks like rehab options that
are proactive, not call us when you fall. It looks
like mental health visits baked into the standard of care,
no begging, no prove you're depressed. It looks like home

(06:37):
based supports that show up before the crisis. It looks
like a trial system that doesn't treat people like lab supply.
It looks like every caregiver being trained and paid like
the healthcare professionals they are becoming or they are becoming
without a choice. And it looks like storytelling movies, shows,

(06:59):
podcasts that doesn't turn Huntington's into a prop for tragedy,
but into a mirror for courage. If the world can
deliver groceries to your door in under an hour, it
can deliver a social worker in under a month. If
we can build algorithms to predict what you want to watch.

(07:21):
We can build care pathways that predict what you're going
to need. If an app can tell you your heart rate,
an integrated record can tell of clinician that a caregiver
is burning out. The technology is here, the will is not.
That's not rare. That's a choice. You know. There's a

(07:44):
team out there googling quietly what does it feel like
to be at risk. There's a partner rehearsing the sentence
I love you and I need help. There's a parent
counting out pills like prayer beads, whisper please let today
be a good day. They aren't rare either, They're just

(08:05):
strategically separated by geography, by stigma, by the myth that
this is someone else's tragedy. People with Huntington's actually pay
a tax encourage every single day. They walk into rooms
knowing they will be misread, underestimated, over medicalized. They sit

(08:26):
through evaluations while strangers write down what used to be easy.
They give blood to research that may not help them
personally but might help someone else's child. They donate hope
to a future they might not get to inhabit. Who
reimburses that who even says the receipt out loud. So

(08:54):
we tell a story to ourselves. We tell ourselves that
the big killers of the big spotlights heart disease, cancer, stroke.
Of course they do, But that story hides a cruel arithmetic.
When attention is a zero sum game, rare gets traded
like spare change. Let's fix the story. We aren't asking

(09:19):
to dim any light. We're asking to widen the beam.
Caregivers are a workforce period. They manage medications, swallowing strategies,
fall risks, psychiatric storms, insurance paperwork, transport logistics. They are

(09:39):
case managers, therapists, security, comedians, chaplains, mechanics, cooks, and diplomats.
If the economy paid them what they're worth, there would
be an outcry of budgets the next morning. Instead, we
pay them in burnout and thank youse. If Huntington's weren't ignored,

(10:02):
caregiver training would be mandatory, accessible and funded. If Huntington's
weren't ignored, respite wouldn't be a rumor, it would be.
It would be scheduled like a vaccine. If Huntington's weren't ignored,
employers would have playbooks, not puzzled expressions there's also a

(10:22):
problem in the media. Imagine a primetime series where the
lead character lives with Huntington's and it's not a very
special episode. It's just life, work, love, checkups, messy days,
good jokes, better boundaries. We've done this for other conditions,

(10:46):
because stories change what people think they know. A storyline
opens the door in someone's mind. A store becomes a policy,
or so adore becomes a policy. A policy becomes a budget,
a budget becomes oxygen. This is how movements breathe. Now

(11:11):
there's a map that we don't use. Every HD family
becomes a logistics genius. They figure out which occupational therapist
actually gets it, which pharmacy doesn't mess up refills, which
neurologists actually returns calls, which night of the week is
best for hard conversations, which chair is safest for teeth brushing,

(11:34):
Which route to the clinic has the fewest potholes. That's
a map, and it lives in note books, in texts
between friends, in Facebook groups, where the algorithm sometimes varies. It.
If Huntington's weren't ignored, we would fund community built maps
and bake them into care. You're Not Alone would be

(11:57):
a platform not a slogan, but there's a question that
just it won't leave me alone. What if the distance
between rare and visible is just one brave decision by
a person with a microphone. What if a hospital CEO
hears this tonight and says, we are going to be
the Huntington Center that treats families like VIPs. What if

(12:21):
a journalist hears it and says, we won't run the
tragedy template, We'll run the dignity template. What if a
tech founder decides to point a tool at caregiver burnout.
What if a legislature hears it and thanks, pilot program
this year, not in five. When families get proactive care,

(12:43):
something remarkable happens. The future shows up early. Strength training
starts before weakness. Communications strategies start before conflict, home modifications
start before falls. Counseling starts before the guilt sooner, hope
stops being a rumor becomes a schedule. Tuesday at ten

(13:06):
a m room two O four, you and the social
worker are going to sit down and build a plan
you can live with. That future exists. It just doesn't
exist everywhere. And that isn't because Huntington's is rare it's
because we've decided the future can wait in certain zip codes. Now,

(13:26):
on a personal note, I have sat with too many
messages that begin we don't usually reach out, but there
is always a butt. The rent is due, the meds
are out, the appointment is in November, the mood swings
are worse. The teenager is terrified, the sibling is angry,
the spouse is exhausted, the parent is slipping. If you're

(13:50):
listening and this is your house, I see you. You
are not a footnote. You are not a cautionary tale.
You are not a tragic subplot in someone else's awareness month.
You are the main character of a story that deserves
production value. Let's stop apologizing for needing more more research dollars, yes,

(14:12):
but also more boring, unglamorous things. Transportation vouchers in home
occupational therapy, caregiver pay, mental health baked into the care plan,
automatic screening for swallowing and sleep trial, travel coverage. That
isn't a scavenger hunt. Let's fas for it like we
are asking for seat belts. Not fancy necessary, because if

(14:36):
Huntington's were truly rare, you wouldn't know three people right
now who are affected but you do directly or one
friend away, and even if you didn't, Compassion isn't a
popularity contest. We are not waiting for a miracle to
make us worthy of help. We are the miracle. The

(14:58):
moms at the table, the dad who learned to braid
his daughter's hair left handed because the right hand doesn't
listen the way it used to. The partner who keeps
showing up even when the conversation loops. The friend who
texts every day every morning hows today. The researcher who
won't let a negative result ruin their weak the advocate

(15:24):
who knows the front desk by the first name and
brings donuts. Because joy is a strategy. The community has
already done the hard part. We turned the pain into skill,
turned with deer into action. We turned why us into
watch us. Now it's time for everyone else to do
the easy part. Look, listened, fund, build, hire, adapt, tell

(15:49):
the story right. Because Huntington's isn't rare. It's here, it's now,
and whether we like it or not, it's a test
of our health care, our media, our politics, our technology,
our neighborliness. We are either the kind of society that
sees the quiet emergencies or we aren't tonight. If you

(16:12):
needed one line to carry out of this room, take this.
Rare is not a reason to do less, it's a
reason to do more. Sooner, smarter. And if you needed
one action, take this. Pick a lever you can pull.
If you're a clinician, make one phone call that you

(16:35):
don't bill for. If you're a media, assign the story.
If you're in tech, prototype the caregiver dashboard. If you're
a lawmaker, draft the respite bill. If you're a neighbor,
knock on the door with a casserole and a calendar.
If you're a family in the thick of it, give
yourself credit for surviving a level that most people will

(16:57):
never have to play. We said at the beginning of
this that Huntington's isn't rare, it's ignored. So let's fail
that test. Let's refuse to ignore it. Let's make it
impossible to ignore. This has been We have a voice radio,
and I'm glad you're here. We'll be back next week

(17:21):
at some point, because until the beam widens, we keep
the light on and just remember you are loved.