My
friend and I kept going back and forth about what the topic of my
lecture would be, and we could not decide. So, I gave the power to
the people: formulated three topics and let the students vote. They
selected what I was guessing they might choose: “Managing a
Genetic Disease in the USA. Navigating the American Medical System
and Surviving to Tell the Story. A Patient's Perspective.”
So
I proceeded to putting together a presentation about the medical
system in the States, which is, as you might expect, quite different
from that of a former Communist country like Romania. I presented our
medical system through the lenses of FH, explaining the appointment
and referral process, the tests that are necessary, sometimes
mandatory, to perform every year, sometimes more often, the process
of filling prescriptions, and a brief overview of what it all costs.
I gave them an idea of what life with FH would cost in the USA if I
had no insurance, or not as good as an insurance as my employer is
providing for me. The whole concept of private insurance is
completely foreign to Romania. The concept of a “pre-existing
condition” is also.
I
also talked to them a bit in depth about FH: what it is, why it is
not widely diagnosed, but how it is believed to be widely common and
widely devastating, as well. I talked to them about my own family. I
also talked to them about the FH Foundation, and how I never knew
anyone else outside of my family with FH until I met the folks at The
Foundation. Kids nowadays are more familiar with the concept of a
virtual family than I was when I was their age, but they were still
impressed with this whole initiative and drive that The Foundation
has to bring people together, to get us educated so we can get diagnosed and to help build bridges, and make resources available to us.
I
was sure this will all be very interesting and captivating to them.
What I did not foresee was that they would be more interested in the
disease itself than the medical system that's helped me live with it.
When I opened the floor for questions, they asked things like “So,
how did you feel when you grew up almost all your life with being
told you will die by the age of 25?” or “Do you think you would
have made different choices in life had you not known about having FH
at an early age?” or “So, do you feel less of a woman because you
could not have children?” or “Was it hard for you to make the
decision to not have any children?”
They
also asked about the quality of my life, and the quality of my life
after heart surgery. About the recovery time and “what hurt” and
for how long after the surgery.
They
also asked more “medical system”-related questions about how
prescriptions are honored and the relationship a patient might have
with a pharmacist in the US. But what shocked me the most was the
“human” aspect of their questions, the interest in me, as
a person, and as a patient.
At
the end of it, I could not help but wonder: who beats the humanity
out of the doctors by the time they get to actually practice? Because
as students, at least if this one example showed me anything, they
all come equipped with compassion, empathy, and the “human factor.”
Or at least these students did.
It
was an amazing opportunity and I would do it all over again. Speaking
about my story, and the roads that got me here is always humbling and
uplifting at the same time. I was honored to share myself and my
experiences with these beautiful, eager minds and I look forward to
more chances to do it again.
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