Hemophilia Journey from Newborn Challenges to Care Coordination with Erin Wegner

Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support.

Erin Wegner is a mother of two boys, Levi and Everett, both diagnosed with hemophilia. With no previous family history, Erin was thrust into the bleeding disorders community after a challenging situation arose shortly after Levi’s birth. From Nebraska to Wisconsin, Erin’s story is about adapting to the unexpected and creating a support network for families facing similar situations.

“When Levi was born, everything was fine until he was circumcised, and he wouldn’t stop bleeding. That’s when we realized something was wrong.” ~Erin Wegner

Today on Beyond the Bleeds:

• When Levi was born, a routine circumcision revealed his severe hemophilia, sending Erin and her family on an urgent medical quest.
• Erin’s husband, Josh, played a crucial role in advocating for further investigation, preventing a premature discharge from the hospital.
• Angie Farrar highlights the critical role of the Hemophilia Outreach Center in coordinating medical care and providing educational resources.
• The Wegner family moved from Nebraska to Wisconsin because they needed closer access to medical facilities and specialized care.
• With Everett’s birth, Erin experienced a more coordinated approach, backed by genetic testing and a clear birth plan.
• As a lead nurse coordinator, Angie Farrar ensured seamless communication and preparations between healthcare providers for Erin’s deliveries.
• Community support through the Wausau Hemophilia Outreach Center gave Erin access to essential networks and resources.
• Erin now serves as a patient liaison, supporting families and advocating for awareness in the bleeding disorders community.

Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?

Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.

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Ready for a weekend of connection, education, and fun?

Join the Great Lakes Hemophilia Foundation’s Wisconsin Bleeding Disorders Conference from June 6-8 at the Kalahari Resort in Wisconsin Dells!

This event is packed with expert-led sessions covering mental health, aging with bleeding disorders, nutrition, advocacy, and cutting-edge treatments. Plus, there’s something for the whole family—peer-to-peer discussions, youth programs (ages 7-13), and childcare services (ages 4-6).

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