Columns

November 12, 2019November 8, 2019

I’m Bleeding, Believe Me

Columns, The Forgotten Factor - a Column by Shellye Horowitz

I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed ... Read more

November 11, 2019November 7, 2019

Adulting Is Hard, Especially with Chronic Illness

Columns, HemoWife - a Column by Alliah Czarielle

Many in my millennial generation dread adulting. The idea of surviving in the real world without the comfort of a family safety net is daunting. Young adults who are ... Read more

November 8, 2019November 6, 2019

Innovation Required: Taking Care on the Road

Columns, Stories from the Road - a Column by Ann Kendall

People with bleeding disorders face a variety of challenges. Healthcare access is a constant concern and covers myriad issues, including political and financial stability and regulatory and provider awareness. ... Read more

November 7, 2019November 5, 2019

We Never Stop Learning

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

I often say that I wish there were a course titled “How to Be a Good Parent.” You would graduate with a diploma and the confidence that your book ... Read more

November 6, 2019November 4, 2019

Children Hear More Than You Think

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

When my oldest son was diagnosed with hemophilia, it did not take long for my husband and I to start researching. More than anything I wanted connection. We found ... Read more

November 5, 2019October 30, 2019

Beautiful, Bachelorette, Bleeder: When to Disclose a Diagnosis

Columns, The Forgotten Factor - a Column by Shellye Horowitz

You’ve been talking to prospective Mr. Wonderful for a few weeks now. You have a lot in common, and if he looks anything like his profile picture, you know ... Read more

October 31, 2019October 28, 2019

The Joy of Serving in a Leadership Position

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

My wife and I met families with ties to the bleeding disorders community through our hemophilia treatment center (HTC). One day, Rita, the former chairwoman of our local National ... Read more

October 30, 2019October 25, 2019

Caregivers Are Huge Blessings in Our Lives

Columns, The 'I' in Hemophilia - a Column by Jared Formalejo

I’ve been struggling with hip bleeds lately. I’m in the middle of recovering from a bleed on my right hip, which may have started because I put too much ... Read more

October 30, 2019October 28, 2019

Limited Choices Make for Hard Realizations

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

“I wish that I were normal,” my mighty warrior Caeleb said as we returned from his recent orthopedic appointment. I looked at him and chuckled. “Son, there is no ... Read more

October 29, 2019October 29, 2019

An Open Letter to Providers Treating Women with Hemophilia

Columns, The Forgotten Factor - a Column by Shellye Horowitz

I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate ... Read more

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