Columns

August 11, 2020August 10, 2020

Women Fight Institutional Bias in the Hemophilia Community

Columns, The Forgotten Factor - a Column by Shellye Horowitz

Have you ever been to a holiday dinner with two tables? One table is designated for “the adults” and the other is for “the kids.” Growing up, this was ... Read more

August 10, 2020August 6, 2020

My Husband Loves to Cook, but Seizures Make It Too Dangerous

Columns, HemoWife - a Column by Alliah Czarielle

My husband, Jared, recently decided to stop cooking after he was injured during an epileptic seizure. It was a hard decision because he enjoys cooking, and food brings him ... Read more

August 6, 2020August 3, 2020

National Hemophilia Conference Provides Hope for the Future

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

Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the ... Read more

August 5, 2020August 3, 2020

Writing and Sharing Our Stories Can Help Us Heal

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

A couple friends came over for lunch last weekend, and one started talking to my youngest son, Caeleb, who is 14. Caeleb and I were both confused by this, ... Read more

August 3, 2020July 30, 2020

Weathering Our Storms As a Loving Family

Columns, HemoWife - a Column by Alliah Czarielle

Monsoon season has begun here in the Philippines. Every time I drive in downtown Manila, I’m reminded of a family trip last year to Tagaytay, a popular tourist destination. ... Read more

July 30, 2020July 28, 2020

Our Virtual Connectedness

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

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from ... Read more

July 29, 2020July 27, 2020

These Comments Make Me Uncomfortable as a Parent

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

When people find out my sons have hemophilia, their reactions often make me uncomfortable. “You are so brave, Cazandra,” one might say. “I don’t know if I could do ... Read more

July 27, 2020July 23, 2020

When Hemophilia Isn’t the Worst Enemy

Columns, HemoWife - a Column by Alliah Czarielle

My husband, Jared, has had hemophilia since he was born. He has known no other life than one with a bleeding disorder. And that is why he does not ... Read more

July 23, 2020July 20, 2020

Beyond Diagnosis, We Found Community

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

I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the ... Read more

July 22, 2020July 20, 2020

Going Back to School With a 504 Plan on Standby

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

School is about to start — at least that’s the plan as of this week. With such havoc in our world, plans for students to return to school are ... Read more

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