Chronic Condition: Afibrinogenemia
I was diagnosed with Afibrinogenemia when I was just one day old. Afibrinogenemia is a rare form of a Bleeding Disorder in which I am missing Factor 1 (Fibrinogen), which aids in the blood clotting process. I will have this condition for the rest of my life, and I currently receive a prophylactic dose of my clotting factor in IV form on a weekly basis to help prevent internal bleeds from happening. I have faced a number of challenges due to this Bleeding Disorder, but I have worked very hard to overcome them all. I do what I can to live a happy and healthy life, despite having this condition, as I have learned that I am not my Bleeding Disorder, and I am capable of living my life to the absolute fullest.
I advocate because I think it’s important to educate others of rare chronic conditions. There was a time in my life where I didn’t have anyone to turn to, as I didn’t know anyone else with my condition. Spreading awareness and letting others know they are not alone with their struggles is so very important. I also advocate because I am passionate about appropriate and affordable healthcare coverage for those with chronic conditions.