Supporting Individuals and Families with Information and Resources for Managing Hemophilia

People with hemophilia -- a serious bleeding disorder – face multiple life-threatening and debilitating issues as well as expensive treatment.

A bleeding disorder can impact the entire family -- physically, emotionally and financially. The Gateway Hemophilia Association (GHA) is positioned to help.

A nonprofit, community-based organization dedicated to the advocacy, education and support of families affected by bleeding disorders, the organization was formed in 1969. After several name changes, it is adopted its current name in 1999: Gateway Hemophilia Association reflects what they do today -- a gateway to information and resources for those with bleeding disorders.

The organization serves families in eastern Missouri and southern Illinois, with some of their members part of the original founding team while others are new to the Association. They all share the common bonds of advocacy, activity and mutual support.

“We provide many resources to those with bleeding disorders,” says Bridget Tyrey, who has served as the executive director for the GHA for the last 10 years. She cites a multitude of programs that include:

• Monthly educational programs
• Educational college scholarships
• National conference scholarships
• Medic alert devices
• Emergency financial assistance
• Bleeding disorder summer camp: Camp Notaclotamongus
• Adult retreat
• Family Education Weekend
• Regional women’s retreat
• Men’s retreat
• Youth golf lessons
• Support groups for men, women, and teens

“All of these resources and fundraisers support the local community within our service area,” she continues, emphasizing the four annual fundraisers: Taste of Tequila, Splash of Charity, which raises funds for our scholarship recipients, Tee off for Hemophilia, Trivia Night Fundraiser and the largest event, Unite for Bleeding Disorders Walk and 5K.

She points out that all events have an educational and awareness component, sharing her enthusiasm, “I have seen an amazing amount of community support at the walk, which has strengthened and empowered the bleeding disorder’s community to connect and share with others what it’s like to live with a bleeding disorder and the strength it gives someone to self-infuse, which they may have learned at Camp Notaclotamongus.”

Understanding Bleeding Disorders

Bleeding disorders are life-threatening, debilitating and expensive to treat. A child with severe hemophilia will spend over $300,000 annually to prevent bleeding. Some children and adults build up inhibitors to the treatment and the costs can exceed $1,000,000 per year. Failure to preventatively treat the disorder can result in prolonged, painful bleeds that cause permanent and severe damage. Access to affordable and adequate health care is critical to being a self-sufficient, contributing member of society.

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Hemophilia is primarily an inherited disease that does not allow blood to clot properly. There is a deficiency in the body of the necessary proteins, also called clotting factors, needed to stop bleeding. Hemophilia A is the deficiency of clotting factor VIII and affects about 1 in 10,000 males. Hemophilia B is the deficiency of clotting factor IX and affects about 1 in 60,000 males.

Von Willebrands is also an inherited disease that does not allow blood to clot properly. The missing factor with this disorder is von Willebrand factor and affects 1%-2% of the population. It occurs equally in both males and females.

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“The main treatment for severe hemophilia involves replacing the clotting factor you need through a tube in a vein,” explains Tyrey. “This replacement therapy can be given to treat a bleeding episode in progress. It can also be given on a regular schedule (prophylactic) at home to help prevent bleeding episodes.”

She advises that some people receive continuous replacement therapy, adding, “Replacement clotting factor can be made from donated blood. Similar products, called recombinant clotting factors, are made in a laboratory, not from human blood.”

Tyrey points out that there is also a subcutaneous injection option, “This is a shot that goes directly under the skin like the way someone with diabetes injects insulin,” she continues. “The FDA also just approved the first gene therapy treatment to treat adults with hemophilia B.”

Importance of Patient Choice

“Choice is important, as well as taking an active role in managing an individual’s hemophilia,” she stresses. “It’s not a one size fits all, there is not a generic option and not all products work the same on each patient. The best choice is working with a comprehensive hemophilia treatment center also known as an HTC.”

According to a 2000 CDC study of 3,000 people with hemophilia, those who used an HTC were 40% less likely to die of a hemophilia-related complication compared with those who did not receive care at an HTC.

Support for GHA

With over 50 years of experience, GHA provides programs and services to people affected by bleeding disorders so that they can better cope and can become advocates for themselves and/or their family. We partner with Hemophilia Treatment Centers, other agencies and medical professionals to provide programs and services unique to those with bleeding disorders to best meet their needs.

Readers can support GHA in many ways. Visit the website at https://gatewayhemophilia.org to donate, volunteer or connect someone who has a bleeding disorder to GHA.