In Eureka, Missouri, Camp Notaclotamongus has some typical activities for a summer camp. They state that camper goals aim to build friendships, confidence, and personal growth with outdoor activities, wood-shopping, campfires, zip-lining, and arts and crafts. However, they additionally provide a space to teach campers to self-infuse medicine for the camper’s bleeding disorders, and build awareness for campers to understand these medical conditions and spread this to the public.
Organized by the non-profit Gateway Hemophilia Association (GHA), Camp Notaclotamongus brings together kids with rare bleeding disorders to foster communication and understanding about the disorders both within the patient community and beyond. The camp has hosted 125 students over its 11 years, this year taking 34 campers. They’ve built a tight and beloved community, as Bridget Tyrey, the executive director of both the GHA and camp, describes, stating how about 85-90% of campers return later to work as counselors.
The camp creates a shared platform to promote learning about the relevant bleeding disorders, including hemophelia and von Willebrands disease [VWD]. These are rare bleeding disorders in which the body cannot clot blood as effectively upon injury, causing excessive bleeding and bruising from injuries, additional recovery time from medical events and procedures, and pain in joints. This often affects the mobility for people with these disorders, who find their options limited by safety precautions due to health concerns. This camp teaches the campers information on their own disorders and ways to minimize the limitations caused by the disease, as well as encouraging the spread of this information to the wider public.
The camp aims to provide methods to live an independent and healthy life in accordance with the blood disorder. This means that the camp provides not only camp activities specialized for the diseases, but also low-risk activities such as gardening and fishing that can keep the kids active and healthy, a priority for those with bleeding disorders who are prone towards joint damage and injury.
For the community affected by bleeding disorders, having access to such activities is relatively new. Tyrey explained to reporter Jessica Meszaros, “Years ago, they didn’t want individuals with hemophilia to do anything. Don’t go out. Don’t play sports. I have a son [with hemophilia] that’s played baseball and soccer. He went to state for swimming because he had access to care and medication, so he could be active. He could have healthy joints and not be in pain. An active joint is a healthy joint, and that’s what we try to promote here at camp.” Other camp counselors echo these sentiments, describing how limiting these disorders can be for many activities, and how much medicine can help protect against injury, in turn, enabling people with these disorders to engage more actively in sports and games. The camp works to teach the campers that they too can engage in any such activities, and endow them with the skills to take these hobbies home with them after the camp ends.
A pivotal part of partaking in these activities is having the skills to handle an injury or the routine blood infusions, which the camp also plays a hand in. A very impactful activity is the self-infusion lessons provided by the camp’s infusion clinic which teaches campers to infuse factors into the blood stream in order to prevents worse bleeding after injuries. Mastering these skills of self-care enables the kids to live independently, not needing to rely on having a nearby parent or doctor to provide care or opting out of activities if they are not available.
This camp promote both an independence from restrictions caused by the disorder, as well as a stronger link to the effected community to share camaraderie, understandings, experiences, and helpful tools, and a full range of accessible activities.
Like many other camps, students describe their joy at the camp playing games, making crafts, camping, canoeing, hiking, and swimming. However, these campers also get the additional gift of a specialized experience and walk away with tools for life.
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For more information on Camp Notaclotamongus, contact Bridget Tyrey at firstname.lastname@example.org or (314) 482-5973