10 Days Old: A Hemophilia Diagnosis

March is Hemophilia Awareness Month, a time to increase understanding, build community, and highlight the lived experiences of families impacted by bleeding disorders. At the Utah Parent Center (UPC), we are honored to share the story of one of our own Parent Partners, Lindsay Davis.

When March Changed Everything

For Lindsay’s family, March holds special meaning. Her oldest son was born in March and, just 10 days after his birth, was diagnosed with Hemophilia A (severe). What they did not know at the time was that hemophilia would become part of their family’s story in a much bigger way, as three of their six children have been diagnosed with this condition.

 

Like many families receiving a new diagnosis, Lindsay and her family faced uncertainty, fear, and a steep learning curve. Over time, they found strength in education, medical support, and community connection. Today, Lindsay not only navigates hemophilia within her own home, but also supports other families across Utah as a Parent Partner with UPC and through her work with The Utah Center for Bleeding and Clotting Disorders.

 

What Is Hemophilia?

Hemophilia A is a genetic disorder caused by a missing or defective clotting factor — a protein in the blood that helps it clot properly.

 

According to the CDC, hemophilia affects about 1 in every 5,617 live male births. An estimated 30,000 to 33,000 males in the United States are living with the condition, and approximately 400 boys are born each year with severe Hemophilia A.

 

For Lindsay’s family, hemophilia has brought challenges and trials. But it has also brought perspective, resilience, and connection to a strong community of support. As Lindsay shares, focusing on the positives helps her family stay optimistic and hopeful.

 

What Are Bleeding and Clotting Disorders?

Bleeding disorders include:

• Hemophilia A
• Hemophilia B
• von Willebrand disease

 

These inherited conditions prevent blood from clotting properly due to deficiencies or abnormalities in clotting factors or platelets. Uncontrolled bleeding can be serious if left untreated.

 

It is important to remember:

 

Individuals with bleeding disorders do not bleed faster; they bleed longer. Medication and proper treatment are needed to stop bleeding episodes safely.

 

Common Symptoms of a Bleeding Disorder

Symptoms may include:

• Frequent or excessive nosebleeds
• Prolonged bleeding from cuts
• Easy bruising
• Prolonged bleeding after injury or surgery
• Heavy or prolonged menstrual bleeding
• Bleeding into joints and muscles (sometimes without a clear cause)

Bleeding disorders range from mild to severe. Regardless of severity, receiving a diagnosis of a chronic condition can feel overwhelming. However, with proper care and support, individuals living with bleeding disorders can lead healthy and fulfilling lives.

 

Finding Specialized Care and Support

If you suspect you or your child may have a bleeding disorder, speak with your doctor about meeting with a specialist. Bleeding Disorder Clinics or Hemophilia Treatment Centers (HTCs) have hematologists trained to diagnose and treat these conditions.

Education and connection are key, especially for families who are newly diagnosed.

To learn more about bleeding disorders, visit:
National Bleeding Disorders Foundation (bleeding.org)

For local resources and support in Utah:
Call or text Lindsay at 801-822-3341

Families affected by bleeding disorders can also join the private Facebook support group: “Utah Bleeding Disorders Community“

At the Utah Parent Center, we are grateful to parents like Lindsay who turn personal challenges into powerful support for others. During Hemophilia Awareness Month and throughout the year. We stand with families navigating bleeding disorders and remind you: You are not alone!

Additional Resources

• Utah Parent Center: Bleeding and Clotting Disorders
• Utah Bleeding Disorders Foundation
• Utah Center for Bleeding & Clotting Disorders

Facebook Group: Utah Sickle Cell Community