Hemophilia is a rare genetic blood clotting disorder that primarily affects males. Children with hemophilia do not have enough of, or are missing, one of the blood clotting proteins, known as clotting factors, that are naturally found in the blood. Children with hemophilia do not bleed more profusely or faster than others. Instead, they bleed for longer periods of time. With proper treatment, children with hemophilia can live a full and active life.
The following initiatives are available for children with bleeding disorders and their families:
- Teen Retreats allow teens to connect with others who are facing similar challenges. Weekend retreats stress physical activity including hiking, camping, canoeing, high ropes course, and even rock wall climbing. Physical activity will help strengthen muscles around joints and prevent joint damage. Teens also undergo leadership training to become mentors for younger children who are learning skills to be able to self-infuse.
- Self-Infusion Retreats introduce the young child to the benefits of self-infusing, a life-changing experience. Children as young as seven can learn to self-infuse. Learning with their peers is a powerful incentive! Also, the teen leaders serve as great role models and also benefit from 'giving back' to the community.
Hemophilia Children and Family Camps provide an important role in giving children a sense of community and are often the first time that they have been around other children with hemophilia. This camaraderie provides campers with a sense of relief that they are not the only ones with hemophilia. As a result, children emerge from camp as stronger, more self-reliant individuals.
For more information, contact Jennifer Meldau or call 803-434-1028.
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