Columns

March 10, 2021March 8, 2021

Isolation Has Had Lingering Effects on My Son’s Mental Health

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

When my youngest son, Caeleb, was in elementary school, my main objective was to get him to school every day and not receive a phone call from the nurse. That ... Read more

March 9, 2021March 5, 2021

Hemophilia Care Entails More Than Treating Bleeds

Columns, The Forgotten Factor - a Column by Shellye Horowitz

Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies ... Read more

March 8, 2021March 4, 2021

How Disability Influences the Way We Parent

www.positivediscipline.com

March 4, 2021March 2, 2021

I’m Grateful for My Son’s First Pediatrician, Dr. Connelly

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

Back in Texas in good ol’ 1996, when my first son came into the world, a nice, well put-together doctor entered our room. He introduced himself as Dr. Connelly, the ... Read more

March 3, 2021March 1, 2021

Teaching Young Adults About Hemophilia Is a Never-ending Process

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. ... Read more

March 1, 2021February 25, 2021

I Made the Mistake of Invalidating My Husband

Columns, HemoWife - a Column by Alliah Czarielle

It just slipped out that one time. I wasn’t even thinking. My husband, Jared, and I had been talking casually about how some of his friends had taken up cycling, ... Read more

February 25, 2021February 24, 2021

Honoring Those Who Went Before Us

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, ... Read more

February 24, 2021February 23, 2021

Sharing Our Personal Stories With Lawmakers Is a Transformative Process

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to ... Read more

February 23, 2021February 19, 2021

Why I Don’t Hate My Dad for Giving Me Hemophilia

Columns, The Forgotten Factor - a Column by Shellye Horowitz

My mom asked me last week if I ever curse my dad for giving me hemophilia. It was a fair question. Recently, I had a bad joint bleed in my ... Read more

February 22, 2021February 18, 2021

Learning About Rare Diseases Broadened My Perspective on Health and Wellness

Columns, HemoWife - a Column by Alliah Czarielle

My husband, Jared, and I were recently talking about Rare Disease Day, which falls on Feb. 28. As a person with hemophilia, Jared has faith in its purpose of raising ... Read more