I was given a rare opportunity this spring, to speak to a class of Medical and Pharmacy students at the Medical School in my home town of Iasi, Romania. I did not even blink when my friend, who teaches English there, asked me to come and speak to her students (in English) about anything I wanted. She was thinking of this lecture more as their chance to enhance their English skills. I was thinking more as their chance to enhance their English skills while listening to something that might be interesting to them, like a medical system, or a rare disease. Or both.
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 Family Heart 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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Blog Post by A.W.
About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.