I was one of the lucky ones being diagnosed shortly after my birth with VWD type one along with my two sisters. I was lucky, because I grew up my whole life knowing I had this condition, since I was diagnosed shortly after being born due to a family history. My most common symptoms are heavy periods, anemia, bloody noses, bruises, and trauma induced joint bleeds in my right ankle. My first period was at age 9 and due to the severity and length I went on birth control at that age. Growing up, I never felt I was different because of this disorder, when I got a bloody nose I dealt with it. When I bruised, I showed my sisters and we compared to see who had the bigger ones that day, it was a normal experience living in a house of 4 women with the same condition.

My mom was diagnosed in her 20’s while serving in the military and grew up suffering from heavy periods, dental bleeds, and heavy nose bleeds. Growing up, my mom always inspired us to speak our minds and be sure to advocate for ourselves and our condition, making sure that we had the same opportunities as everyone else. When we moved to Wisconsin she became an active volunteer in our local chapter. She would lead girl scouts in activities to teach them about bleeding disorders so that they can earn their health badge. She’d go to local health fairs to help raise awareness to clinicians, parents, and others about bleeding disorders or she would deliver poinsettias to help raise funds for our local chapter. With all of these activities, my mom took us girls with her (at the time begrudgingly) but as we watched and observed her passionate advocacy efforts we learned and as we got older, we began to take over.

My bleeding disorder has allowed me to become a fierce and passionate advocate since I became involved in CBE (MI) in 1998. My years at camp have been tremendously impactful into the person that I am and what I want to do in the future. As a camper, I was blessed to be able to learn about my bleeding disorder and be surrounded by people (other than my sisters) who had it. However, my formative camp experiences came when I was older and became involved as a counselor in training, a counselor, nature director, camp manager, eagle outpost counselor, and archery director. I don’t think that there is any other more incredible feeling than helping youth understand their bleeding disorders through various programming efforts. It’s amazing to watch kids as they realize that in the camp environment they are not the only one affected by a bleeding disorder and that for that one week they get to live a worry free life. The various roles I have played at CBE have helped me determine my lifes passions and where I would like to go once I enter the professional career. My goal is to continue working in higher education as a professional residence director in housing at a university. Then after serving in that role I want to work with underserved youth (especially in the bleeding disorders community) and help connect them to resources as they transition into high school and college.

I got involved in my local chapter on the advocacy committee and was sent to DC, I coordinated a panel on aging as a woman for my state chapter meeting, and when I was 18 joined the National Hemophilia Foundation program, NYLI. During my time in NYLI along with time time as an undergrad at UW oshkosh I continued to fiercely work to raise awareness for people with bleeding disorders. I attended Washington Days and met with my legislators to promote legislation that impacted the health of our community. I spoke at the national conference twice about my experiences as a person with a bleeding disorder and about the benefits of going to bleeding disorders camp. At the international bleeding disorders camp conference (NACCHO)I lead a session about retention and involvement in young adult staff members at camps. These experiences inspired me to take a position on my campus as a Health Advocate, helping give my peers in the residence halls access to health items and health education. Additionally I was involved in my campus’s World AIDs Day event, bringing a hemophiliac as the keynote speaker and creating a table all about how the bleeding disorders community was impacted by the HIV/ AIDs crisis.

I have also been fortunate enough to take my passion for the community to the international level as I attended the last 2 WFH conferences (most recently winning the Susan Skinner Memorial Fund Scholarship). My first WFH congress was in 2014 (Melbourne, Australia), after not receiving a scholarship to attend, I was encouraged by my peers to pursue my passion and raised the funds to attend via social media fundraising. This conference allowed me to network with folks from all over the globe, create new friendships and connections, and learn about bleeding disorders issues on a global scale. I came back with a renewed vigor and passion in my heart to continue learning, growing, and advocating for this community that I was so tremendously passionate about. Later that year I became a member of the Right to Live Campaign social media team. It is a group that started out raising awareness for those with bleeding disorders in the Philippines, but quickly grew to an international network and page where we could share information about bleeding disorders on a local level. Our team is composed of folks from India, the Philippines, Australia, and the US. Additionally, after learning I had received the Susan Skinner Memorial Fund Scholarship for the 2016 World Congress, I became an active member and volunteer in preparing the first ever women’s booth for the congress display area. After attending the WFH 2016 Congress activities I realized that there are many issues that we as a global bleeding disorders community need to focus on strengthening and growing to keep the amazing momentum that this occurring all over the globe. Through attending the WFH Congress activities I also discovered some personal things that will help me in my future, I will also discuss that. Through my congress activities I discovered three things to focus on moving forward for myself and the global community. The first is all about women and establishing a better base of education, awareness, and connection for the females across the globe who suffer from bleeding disorders. The second thing that could improve growth is continuing the legacy and stories of the HIV/AIDs generation from within the bleeding disorders community. Finally, the WFH Congress activities helped me solidify my passions and helped me discover where I would like to go in my career path. This final section will go in depth into all three of those areas as well as conclude with my final thoughts of how amazing my time at congress was.

Because of this encouragement from my mom I have been able to travel to Europe and Australia. I have completed by bachelor’s degree and am currently working toward my masters degree in public administration, hoping to one day give back to a community that has given me so much. So while my bleeding disorder at times can be limiting and inconvenient, I overall feel tremendously blessed by my diagnosis. It has provided me with opportunities that have otherwise seemed unfathomable and because of the support of my family, mentors and friends I have been able to overcome my disorder to soar to new heights in helping to raise awareness of bleeding disorders.