Making a Difference for People with Bleeding Disorders
With support from caring and generous people like you, our vision of people in the bleeding disorders community living their lives without limits is being realized every day. Every member is unique and special, but in many ways their journeys are alike. We’re proud to be making a difference for them through our mission of education, support and advocacy.
Connecting Families for Learning and Support
When Deana’s son Raffi was diagnosed with severe hemophilia A as a baby, she wanted to take the burden off her son. Deana attended GLHF’s annual Wisconsin Bleeding Disorders Conference.
“I wanted to educate myself,” says Deana. “I also wanted to meet other families like ours, to learn their coping mechanisms and reassure myself that my son was going to be ok. We connected with two families and both of those mothers have been such a great support system for me.”
Helping Individuals Follow Their Passion
For David, an adult triathlete diagnosed with Hemophilia B when he was an infant, the takeaway from GLHF has been about how to stay healthy. David’s completed 15 triathlons and is a strong advocate for the Hemophilia Walk.
“The Hemophilia Walk gives us a voice and promotes a healthy lifestyle. It affords us the opportunity to get up, walk around and be active,” says David. “We get to meet other families that have the same struggles, and there is a special bond like no other that is created through events like this. We are a community that is stronger together than separate.”
Spreading the Word About Life with a Bleeding Disorder
Tracie and her family joined the GLHF community after her newborn son Zach was diagnosed with a bleeding disorder. She’s now an advocate who attends Washington Days with GLHF. “We quickly learned that it’s our responsibility to educate others, including our elected officials, so that they can understand just how costly this chronic illness is and how important it is to care for this segment of our population,” says Tracie. “Teaching others about living with a bleeding disorder is one of our primary goals and will continue to be for the rest of our lives.”
Being diagnosed with a bleeding disorder is life-changing, but with the support of GLHF and the members of our nurturing community, people can still live a life without limits. GLHF’s impact is as individualized as our community members themselves.