Vim & Vigor - Winter 2019 - UVA - 56

Tuberous Sclerosis Alliance guidelines recommend intermittent lifetime
surveillance for these manifestations.
I became a physician because I didn't
want others to have the same experience I did. I'm proud that the TS
Alliance recognized our clinic for its
collaborative approach.

Understanding
the Demands

Being a patient and a physician puts me
in a unique position. It helps me understand the demands of chronic disease,
which can creep up in surprising ways.
Sure, there's always the nuts and bolts
aspect of it-the demands on time,
going to tests and appointments.
However, what continues to surprise
me the most is how TSC can find me
when I least expect it. The best example
I can give is with my running, a huge
source of fun and stress relief for me.
Last summer I pushed myself to run a
7-minute mile. When I finally accomplished this goal and finished my run,
I felt awesome-until I took my shoes
off. You see, my right foot was covered
in blood, so much that it bled through
my sock into my shoe. TSC is associated
with nail bed tumors called ungual fibromas. They have a tendency to bleed when
irritated, and I had really irritated mine.
I think that's what I've learned the
most about TSC and having a chronic
disease in general, I suppose. It's there
on good days and bad, it's there when
you're busy and don't have time to
think about it, and it's still there when
you have quiet time and can. It never
leaves you.
Knowing that I'm dealing with a disease I was born with and will die with
continually leaves me with a sinking
feeling. I can't say it's a fight or a struggle, as my case is so mild in comparison
to so many others. However, I think my
role is to help those for which this disease is truly a fight, day in and day out,
for basic quality of life and, for some,
even survival. n

W IN TER 2 0 1 9

WHY I TRAVEL FROM
MISSISSIPPI TO VIRGINIA
FOR MY HEALTHCARE
During her sophomore year in high school, Abby Loden learned she had a benign
tumor near her brainstem. "My doctor first removed what we thought was a
mole," Loden says. "He recognized my spot as a possible symptom of neurofibromatosis type 2 [NF2]. So he scheduled an MRI scan and found several additional
tumors indicative of NF2."
In 2008, while studying at the University of Mississippi in Oxford, Loden first
met neurosurgeon Ashok Asthagiri, MD. She enrolled in an NF research study
that he was leading at the National Institutes of Health (NIH) in Bethesda,
Maryland. Dr. Asthagiri soon realized that Loden needed surgery to remove a
tumor on her brainstem. Despite hearing loss and multiple surgeries on her
brain and spinal cord, Loden graduated from college and became a sports
reporter in Mississippi.
So impressed with her care, Loden followed Dr. Asthagiri when he left NIH
to come to UVA Health. "I have had one surgery at UVA and received a Gamma
Knife® radiosurgery treatment in fall 2018. When Dr. A saw that my radiosurgery
was scheduled the Wednesday before the Labor Day weekend, he canceled his
plans to go out of town so that he would be around if something came up,"
Loden says. "Some question why I travel from Mississippi to Virginia for care.
It's simple, really. Trust. Over the last 10 years, I've developed a relationship with
Dr. A that I would have a hard time building anew. We've developed a common
goal for my future."
Hear more about Abby Loden's journey at uvahealth.com/abby.

http://www.uvahealth.com/abby

Vim & Vigor - Winter 2019 - UVA

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