Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with hemophilia and that others have been in your shoes. Here’s a collection of some of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

What I Remember as the Mother of Newly Diagnosed Children

On Mother’s Day, columnist Cazandra Campos-MacDonald reflects on her earliest memories as the mom of children with hemophilia. She hopes mothers with children diagnosed with hemophilia or other rare disorders understand the importance of seeing past their child’s condition.

Read the column

As a Parent, I Can Only Show Up With What I Know

When his newborn son was diagnosed with hemophilia, columnist Joe MacDonald didn’t know what he was doing and he felt helpless. Once he discovered a community for his son’s diagnosis, he realized that arming himself with knowledge was the best thing he could do.

Read the column

Women Must Keep Pushing for Hemophilia Diagnoses

After receiving the results of her genetic testing, columnist Shellye Horowitz stresses the importance of women advocating for an accurate hemophilia diagnosis. Wrong labels can impede access to necessary treatment.

Read the column

Combating 4 Common Myths About Hemophilia

Shellye shares some of the most pervasive myths about hemophilia, and explains why these misconceptions are untrue. Combating these mistaken beliefs with education is critical for the well-being of those with hemophilia.

Read the column

Exercising With Hemophilia Has More Pros Than Cons

Columnist Jared Formalejo writes about the benefits of exercise for those with hemophilia and how keeping the body strong helps to prevent bleeds. He encourages patients to pursue exercise and play.

Read the column
Books icon

Join our Hemophilia Community

Visit the Hemophilia News Today forums to connect with others in the hemophilia community. These forums are designed for patients, caregivers, and medical professionals to discuss issues, ask questions, and share experiences.

View All Forums
Speech bubble icon