Last week, I had the opportunity to speak at Boston University’s (coincidentally my alma mater) Medical School in a graduate-level biochemistry class about living with VLCAD. My metabolic specialist, since six month of age, invited me to be part of his guest lecture on fatty acid oxidation disorders. He explained that students retain the technical information better when they understand the human-side of the biology. It becomes about more than just enzymes and metabolic chains, but about people. He has also dedicated a portion of his busy career to spreading awareness and educating doctors, current and future, about fatty acid oxidation disorders.
Recently, he told me there are only 95 metabolic specialists in the country. With the increase of cases in fatty acid oxidation disorders increasing significantly faster than the influx of people into the field, he has been trying vigorously to recruit medical students into the specialty. He also educates those who will be going into other areas of medicine to boost awareness of the patients, their symptoms and treatment that leads to healthier lifestyles. Honestly, I cannot think of anyone better to do this; I was so honored to be a part of it, even if just in a minor way. He has been the most amazing doctor—always knowledgeable, on the cutting-edge of medicine, but with a kind heart and impeccable bedside manner. As I told the students in the lecture, he was patient with me, even when it was probably unbelievably frustrating. Even when I was sick, but too young and reckless to listen to his advice, he was patient. He was not only a doctor who provided the best care, but with his guidance, I learned how to manage my disorder. As those with chronic disorders know, it is about more than one-time treatment, but learning how to live a happy life despite illness.
Looking out into the audience, I saw students my own age looking back at me, which was surreal in itself. But these students listened attentively. I saw not necessarily the stereotypical students, but the future researchers and doctors of the world. The memory of their faces gives me great hope. Despite my speech which I am sure got convoluted at times, there was not one interruption and all I could see were faces of genuine interest. With my speech going longer than expected, there was no time for Q&A in the lecture. However after, instead of rushing out after class ended (which I probably would have done in many of my college classes), they stuck around on their own time to ask me questions. Not only questions, but great questions that you could tell were truly to enhance their learning “How does alcohol intake affect your disorder? Why would you take oil for medicine? What do you find works best to help you feel better during times of illness?”
One girl came up to me and said “Thank you so much for being here. We are in-between exams right now and it has been a really stressful time. Listening to you speak reminds a lot of us why were are going through all of this.” Their questions and enthusiasm was truly inspiring. If these students are a glimpse into the future of medicine, it gives me such tremendous hope for not only my future, but the future of others who will suffer from fatty acid oxidation disorders and other chronic disorders. It gives me hope that the medical community will continue to grow and gain more knowledge on how to help those with fatty acid oxidation disorders live healthier and even more productive lives. I hope my contribution to these students’ education was that to be not just a good doctor, but a great doctor, one has to understand not only the physical side of their patient’s battle, but the emotional one as well. That is something I always had in a doctor, which was especially crucial through childhood and adolescence. It allowed me to be where I am today. I have not only thrived physically, but learned how to cope, which was a crucial part of improving my quality of life. I need to thank my doctor for not only saving my life, but helping me live my life to its fullest potential. #VLCADprobs