My first bleeding disorders conference was the North American Camping Conference for Hemophilia Organizations (NACCHO). Through NACCHO, I discovered how truly important the camp experience is for the bleeding disorders community and became excited that a large part of my job was to put on camp. Our chapter hosted two family camps in 2014: one for families coping with von Willebrand disease and platelet deficiencies, and another for those with hemophilia. We hosted nearly 20 families at each camp. This year, we’ve decided to combine the two camps.
Family camp is a weekend away from the daily bustle of appointments and stressors for our patients and their families with bleeding disorders. Our family camp has several goals: to bring the family unit together in a safe and fun environment, to connect patients and families with others with bleeding disorders so they continue growing their network of support, and to offer intimate education opportunities about living with bleeding disorders. It also offers sessions for caregivers. (See “Family Camps.”)
In just one year with our chapter, I’ve witnessed incredible growth by our community members who have participated in family camp. A nervous family with no family history of bleeding disorders attended their first camp. Through it they discovered our wide community of local families with whom they can discuss their experience. The father even learned to infuse factor for the first time. That is always a special moment. Many siblings without bleeding disorders arrive with apprehension, only to experience a community event embracing them. Our family camp reinforces inclusion. Parents arrive exhausted and stressed. Yet they are unable to resist the urge to dash through a field with their face painted and have a raw egg smashed on their head. Imagine the look on their children’s faces! At family camp, I’ve witnessed many moments where someone tries something new, such as intimidating adventures like zip-lining.
I am fortunate to be part of family camp, which enables critical connections between patients and the families who support them. I encourage all community members, wherever they are located, to attend their local family camp. These events grow our community and enrich the lives of those with bleeding disorders.
Amanda Swenson Turner is the executive director of the Central Ohio Chapter of the National Hemophilia Foundation, located in Columbus.