Bleeding Disorders Foundation of North Carolina works to raise awareness for rare diseases

This article was written for our sponsor, Whitley Law Firm.

Each March since 2016, Bleeding Disorders Awareness Month has been observed. The designation by the U.S. Department of Health and Human Service was part of an ongoing effort to spread awareness of bleeding disorders and to work toward prevention, treatments and cures.

According to the National Hemophilia Foundation, nearly one out of every hundred people have von Willebrand Disease, one of the most common bleeding disorders. However, many individuals are living either undiagnosed or with misdiagnoses that can lead to further complications. In the fight against these conditions that can be wide-ranging in severity, the Bleeding Disorders Foundation of North Carolina (BDFNC) is committed to providing North Carolinians affected by bleeding disorders with support and services, from educational programs and monthly support groups to advocacy programs that ensure access to medications and treatments. Through the organization’s work, BDFNC is dedicated to improving the quality of life of those with bleeding disorders such as hemophilia, von Willebrand Disease, other ultra-rare factor deficiencies, and platelet disorders.

For Gillian Schultz, Director of Programs for BDFNC, the organization was a lifeline when her son was diagnosed with a bleeding disorder in 2010. “It’s scary when you have a newborn diagnosed with this life-threatening condition,” said Schultz. “I connected with what was then called Hemophilia of North Carolina pretty quickly, and received names and contacts for other parents who had kids around my son's age.”

Schultz was welcomed with open arms and began receiving the support she needed. As Schultz got more involved in BDFNC, she decided to give back by volunteering, eventually becoming the Walk Manager for the first Charlotte Walk in 2015. Since then, Schultz has grown into the role of Program Director and has developed programs to meet the needs of her community.

Through education, advocacy, research promotion, and supportive programs, BDFNC is committed to improving the quality of life for individuals living with bleeding disorders. “It’s an amazing community,” said Schultz. “We listen to what our community needs to make sure that we are providing the best services that we can for them.”

“We support not only the person with the bleeding disorder but their entire family," said Charlene Cowell, the Executive Director for BDFNC. "The treatment centers and the hematologists, on the medical side, can support the person with the bleeding disorder for treatment options and things like that. But when it comes to psychosocial support, the siblings often feel left out, like the other child is getting all the attention because they have a bleeding disorder. Or [consider] the new parent, trying to learn how to infuse their child with a needle multiple times a week. That's another really important component. What our organization offers is a place for the entire family to feel supported and to get resources and to meet one another," said Cowell.

BDFNC also provides emergency financial assistance to those in need. “We approved a financial assistance request from a family who was stuck at the hospital and couldn’t leave their son there," said Cowell. Because their hotel bill would put them behind on mortgage payments for their home, BDFNC was able to assist them in this way. This is just one shining example of how critical BDFNC is for those affected by bleeding disorders in the state. With its wide array of services, BDFNC ensures that all North Carolinians living with bleeding disorders can access the resources and support they need.

The organization also provides educational programs and monthly support groups to help patients and their families connect, learn, and share their experiences. There are also focused resources available to men, women, teens, and Spanish-speaking patients to offer programs that meet specific needs within the community.

By working with community partners such as Whitley Law Firm, BDFNC can reach more people and help them access resources that otherwise might not be available. Whitley Law Firm was motivated to help BDFNC, in part, because it’s an issue that does not generally get a lot of attention. “What I've learned is that education and awareness are so important to potentially catch the diagnosis. The immediate thing [for individuals who are affected] is to feel isolated. But groups like this, and just talking to someone else that has had that experience, I think that can instantly give hope and relief to someone,” said Ben Whitley.

Through outreach and education, BDFNC has been able to dispel common misconceptions about these conditions and provide information on proactive treatments and medical alerts that can help prevent serious complications. Already coming a long way to help those in North Carolina with bleeding disorders, BDFNC is still working striving to make a difference in the lives of those affected. And, as Charlene Cowell explains: “Once you meet another parent who [can say] ‘look, it’ll be okay,’ that’s so reassuring, and it gives families hope that they can enjoy their life and have access to the support they need.”

This article was written for our sponsor, Whitley Law Firm.