Guest Blog: Living with a rare bleeding disorder

2.27.20

Afibrinogenemia is a rare bleeding disorder that causes my blood to clot improperly. Living with a rare disease oftentimes has its difficulties, there are not many other people that you can confide in who truly understand the struggles that you have and will continue to face. However, I have found comfort and acceptance in sharing my story, connecting with others, and knowing that we are not alone in the rare disease community. Rare Disease Day is the perfect opportunity to bring this awareness, share your story and build this community.

Having a bleeding disorder is something that I have become accustomed to. It has been with me since the beginning and will accompany me the rest of my life. There are different bleeding disorders, including hemophilia, Von Willebrand disease, or a rare factor deficiency. Each of these disorders indicate a missing or defective clotting factor that makes it more difficult for an individual’s blood to clot properly. My bleeding disorder, afibrinogenemia, would fall under the rare factor deficiency category of bleeding disorders.

Growing up, I have learned how to advocate for myself in hospital settings and become independent when managing my bleeding disorder. Through this, I have found a passion for bringing awareness to the bleeding disorder community.

One of the most important considerations when meeting someone with a bleeding disorder for the first time is to listen and recognize that these conditions are often invisible. Several times people have assumed that I am faking an injury for attention because you can’t always see an internal muscle bleed. I have even had people refuse to be my friend because of having a bleeding disorder. It’s important to recognize that we’re people too and we want to be treated the same as everyone else.

Individuals who have a bleeding disorder are ordinary people who do their best to live their lives to the fullest; they may just have to manage their lives a little differently. When I talk with someone who is unfamiliar with bleeding disorders, they often get uncomfortable and don’t know what they should or shouldn’t say or think that we all live in a bubble. For most people who have a bleeding disorder, we are quite active and strive to live as “normal” of a life as possible. We may have a bleeding disorder, but the bleeding disorder doesn’t define who we are as human beings.

Bringing awareness to bleeding disorders can not only help an individual with a bleeding disorder, but also the entire bleeding disorder community by improving the knowledge and care provided to patients. For instance, going to the emergency room may become easier on patients as doctors and nurses become more familiar with bleeding disorders through the awareness that is being raised. Having nurses and doctors become more knowledgeable about these specific conditions can also help state legislators understand the health care options that are beneficial to an individual with any type of chronic condition. Awareness can also help improve treatment and research options for bleeding disorders.

I have dedicated my life to helping the bleeding disorder community. I am finishing up my master’s degree in Health Psychology with the goal of eventually becoming a Health Psychologist within the bleeding disorder community. I also work for the Hemophilia Alliance of Maine – a nonprofit that focuses on working with the bleeding disorder population in Maine to provide support, education and advocacy. I am passionate about working with the bleeding disorder and rare disease community and do what I can to make a difference.