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Chiari & Syringomyelia Foundation | State Farm Neighborhood Assist | State Farm®

September 11, 2019


It’s an invisible disease. Not a lot of people see it. It’s just hard when
people can’t see the pain you’re actually in. [MUSIC PLAYING] Chiari malformation is
an invisible disorder. You can’t see what’s going
on in a person’s head. And they live with
a lot of pain. I don’t really
understand what Chiari is, so it’s hard to
explain to them what it is. Chiari is a herniation
of the cerebellum, where part of the brain is actually
coming out of the skull cavity. The spinal fluid
can’t really flow through that opening the
way that it would otherwise need to. And it makes everything
a lot tighter around the bottom
of the brain stem and the top of the spinal cord. Biggest symptom is headache,
which is what most people have. But there’s a lot
of other symptoms. I think the list is about
200 different symptoms. It’s not always that everybody
presents the same way, which is, I think, one of the
harder things about Chiari to diagnose. My family learned about
Chiari malformation when my oldest son was
diagnosed at age seven. I had my first surgery
when I was seven. I missed out on a lot of
things with my friends. I had to stop playing soccer. Sometimes I feel like
people look at me like I’m weak or something. And it’s hard on the kids
because they don’t always understand. Even though they
have this Chiari, they don’t always
understand why it’s keeping them from
doing all of the things that other kids are doing. I can’t go in bouncy
houses or anything, or on a trampoline, because
it might still hurt my neck, even if I’m wearing
my neck brace. All of my three
children and myself suffer from Chiari malformation. My daughter, she had a lot
of trouble with swallowing. So when she’d eat food or
drink drinks, she would choke. I wear out a lot. Sometimes I just
don’t want to show it because I want to keep going. When my second son
started to have issues, and we went to our
pediatrician, he goes, we’re getting an MRI
done immediately. And we got a call few days later
that Brent also had Chiari. My parents– it’s taken
a huge hole on them emotionally, because they don’t
want to see their kid suffer. Chiari is not real
well known, and that’s what we’re trying to change. [MUSIC PLAYING] We are using the
State Farm grant money to put on a Consider
Chiari lecture. And there is four
different neurosurgeons that are talking about different
aspects of Chiari malformation and treatment to
really reach out to the community, both
patients in the community as well as other doctors
in the community. So watching your children
go through something like this, 23 surgeries,
multiple testing, it’s beyond heart breaking
for a parent and a mother. You can’t put a Band-Aid
on them and fix them. If I didn’t have Chiari,
I would ride a pony. I could go roller skating. I could do a bunch of stuff. It’s put me through
a lot, but it’s made me a really strong person. I’m committed to
make a difference. And sometimes, I don’t know
what that means in my lifetime. But I know every day that we’re
out there spreading awareness, putting together
lectures, raising money for the research
that’s going on, it’s a step closer
to finding answers. [MUSIC PLAYING]

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