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CF Foundation | Claire Tinsley


CLAIRE TINSLEY: My
name is Claire Tinsley. I’m 25 years old, and I was
diagnosed with CF at birth. I have one delta F508
mutation, and one W12A2X For the most part
of my childhood, my CF was just another
kind of fun fact about me. It wasn’t something that really
was super present in my life. I was definitely pretty
healthy, very active. I started singing when I
was in sixth grade, I think, and that made a huge
impact on my life. School and music
were two things that were hugely important to
me when I was growing up. My first year at the
College of William & Mary, I had my first
major exacerbation, in the sense, that it wasn’t the
first time I was hospitalized. But it was the first time that
my FEV1 really, really dropped. It was a really dramatic change. That was eye opening. It made me more
conscious of the fact that I might have to go to
the hospital every year, and I might have to have
IV antibiotics more often. That’s just the reality of CF. It’s progressive, and
it might be the reality of my future as well. When my doctor told me
about the triple modulator, I felt a sense of relief. Because when you have
an illness like this, it’s hard sometimes to
really think about anything beyond this year, next year. And if the triple could
stabilize my health to the point where
I don’t need to go to the hospital
twice a year or more, it would just be a weight
off of my shoulders. CF is just something that’s
always present in my mind. I can’t really think about
the future, think about jobs, think about dating. I’m definitely very hopeful
while trying to keep my expectations in check. SPEAKER: If in your mind, you
want to take on something else or feel more productive, then I
would take on pulmonary rehab. CLAIRE TINSLEY: My care team
at Inova is really great. They’ve tried different
medications with me. The social worker
has been amazing, helping me sort of sort
through my emotions and the mental health aspect
of having a chronic illness. I have always been very
artsy person in the sense that I love going to museums. I love art. I studied art history as
my undergraduate degree, and I also love to
sing and perform. Singing has– I can’t say how
much it’s helped both mentally and physically with my CF. It’s something that
when I’m singing, it feels like I have
power over this disease. I want to be involved in the
community and continue to sing, have a good career,
and really give my all to teaching, which
is what I want to do. But sometimes it feels like I’m
kind of holding onto a rope, and just like hoping
that eventually, I’m going to be pulled up. And the idea that the
triple could give me my life back is just in and of itself
a really amazing addition to my life. I know that not everyone
will be able to benefit from the triple combination
just as I was not able to benefit from previous
modulators that came out. It can be difficult to
wait and to just be hoping, but the fact that the
CF Foundation continues to do this research to
really fight for a cure is incredibly encouraging.

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