I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four hours away, where there were specialists that could figure out what was wrong. Being so very rare, this type of bleeding disorder was something that some of the hematologists and most physicians had not heard of before. My parents were informed within a few days of my diagnosis that I might not be able to live a very long life because my body does not produce fibrinogen. At 24 years old, I am still alive, and it has now been proven that you can, in fact, live without fibrinogen. I live my life to the absolute fullest, and plan on continuing to do so for the rest of my life.
When I was younger, I was able to play softball and tennis with minor injuries. In high school, I was captain of my varsity volleyball team and played on the junior Olympic volleyball team. Due to a volleyball injury, a pulled groin muscle turned into a four and a half month internal bleed, which lead to missed school and a lot of needle pokes for infusions. Most recently, I made the decision to start a prophylactic treatment for my bleeding disorder, but unfortunately my veins are unable to handle the weekly treatments, so I underwent surgery to receive a port. The port placement was not the simplest, which then led to several additional health concerns, with micro bleeds in my neck and issues with the placement itself. However, I am determined to get this figured out so I can continue with my prophylactic schedule, and learn to infuse myself in the comfort of my own home. All of the bruises, sprained fingers, spontaneous muscle bleeds, and hospital and clinic visits have really shaped me into the person I am today. Yes, it would be great to not have a bleeding disorder, but it is something that I have really grown to love about myself. I am proud of the person that I am, knowing everything that I have overcome, and the strength that I have gained along the way.
As this is a lifelong disease, I hope that one day there will be a cure, or better treatment options. Right now, the IV infusion that I receive for my bleeding disorder takes upwards of two hours to administer. If there could be easier ways to get this dose, especially in a shorter amount of time, or if the half-life of the medication could be longer, it would be quite beneficial to not only my life but to everyone else in the world affected by this bleeding disorder.
I share my story to try to show others with the same disorder as me or any type of chronic illness that it is possible to get through the difficult times, as long as you stay positive and optimistic. I want to inspire others and let them know that they are not alone with their struggles. My bleeding disorder has influenced my career path in life, where the desire to help others started for me at a young age, due to others helping me with health concerns relating to my own bleeding disorder. I graduated in 2017 from the University of Maine, with my Bachelor’s Degree in Abnormal Social Psychology and a double minor in English and Child Development/Family Relations. After graduating with my undergraduate degree, I started graduate school, where I am currently working on my Master’s Degree in Health Psychology. Once I graduate this coming year I will continue on to get my PhD in Health Psychology, with the goal of eventually being a health psychologist, where I will work within the bleeding disorder community to help the affected understand their condition and how to cope with it.