As a child and more specifically as a teenager I spent a great deal of time in the emergency room. By the age of 13 I had been to the emergency room 16 times for “possible fractures” that could not be determined, related to severe soft tissue swelling and bruising. My parents would always say “you need to decide when the pain is real Nikole.” I vividly remember the hospital staff asking me, in a whisper, if I felt safe at home and if anyone was hurting me. In spite of my numerous hospital visits, it was actually my mother’s health issues that led our family to a von Willebrand disease diagnosis. We were a bit confused at first, but with the help of my local chapter and Hemophilia Treatment Center I was able to get the care and support necessary for my bleeding symptoms and specific bleeding disorder.
Through the HTC I discovered that all those misdiagnosed fractures were in fact joint bleeds and that only my using factor would prevent and treat the bleeding. Factor replacement made an immediate difference and continues to make a difference in my quality of life. Sometimes I think I’m Wonder Woman and over do it, but generally if I stick to my treatment plan, I have no complaints. I do have joint damage from all the bleeding episodes, but constant exercise and prophylaxis treatment helps.
Earlier I talked about getting support from my local chapter. I remember, like it was yesterday, when the Western PA Chapter of the National Hemophilia Foundation invited me to their Education Weekend and camp. I could never have anticipated that after only two events, helping those in the bleeding disorders community would become my passion. I found only after doing a few small events that public speaking, mentoring, and teaching would become my niche. I idolized leaders who worked for local chapters, camp, and NHF. I participated in NHF’s National Youth Leadership Program (NYLI), moved to NYC to serve as their summer intern, and served as my camp’s Director of Fun for 3 years. Now, I am proud and excited to be a full time employee at NHF; my title is Education Program Coordinator. I work with my manager on all of the Inhibitor Summits as well as rare bleeding disorder pre-conferences at NHF’s Bleeding Disorders Conference.
During my time as an NYLI member, I volunteered and spoke during the WFH’s World Congress in Orlando, FL. There I met other youth from across the globe and WFH staff. During the meeting I was asked to join the WFH Youth Leadership Committee. My participation with this committee has presented me with invaluable, once in a lifetime opportunities. I attended their youth workshop in Barcelona, Spain and recently traveled to Glasgow, Scotland as a Susan Skinner Memorial Scholarship Recipient. In Glasgow I spoke during NMO training, World Congress, and attended General Assembly. Through these experiences I have learned so much, met lifelong friends, and been given opportunities that I am beyond grateful for.
It may seem strange but I see my bleeding disorder as a blessing. Sometimes the related health issues can make living with a bleeding disorder unpleasant and difficult. But being part of this community makes it all worthwhile. I encourage everyone to connect with their local communities and find their bleeding disorders family. Work together to make a difference so others may not have to face the challenges that so many of us have endured. When I speak to others throughout the world and across my own country, I always challenge folks by asking them where will you leave your fingerprint? Your fingerprint is unique, so I encourage folks to think about where and how they want to leave theirs.