Columns

March 12, 2020March 10, 2020

Music Is in the MacDonald Blood

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

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in ... Read more

March 11, 2020March 9, 2020

It’s Hard to See My Son Walk with a Cane

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

My 14-year-old son Caeleb is having trouble walking. Some days are better than others, but the bad days are filled with crazy pain. His right knee and ankle have ... Read more

March 9, 2020March 5, 2020

As We Get Older, Sometimes We Outgrow Friendships

Columns, HemoWife - a Column by Alliah Czarielle

Growing up is exciting. Most young adults spend their late teens and early 20s meeting new people and making new friends. As we grow older, we get jobs, move ... Read more

March 5, 2020March 3, 2020

Hemophilia Does Not Define My Sons

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

I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but ... Read more

March 4, 2020March 2, 2020

What It Means to Be Rare on Bleeding Disorders Awareness Month

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

It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. ... Read more

March 3, 2020February 28, 2020

It’s Not Easy Getting Appropriate Care

Columns, The Forgotten Factor - a Column by Shellye Horowitz

Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to ... Read more

March 2, 2020February 27, 2020

I Find Healing in Music and a New Ukulele

Columns, HemoWife - a Column by Alliah Czarielle

Recently, I’ve taken to the ukulele. I love its diminutive size, how its four strings (versus six on a guitar) are perfect for my tiny hands, and the happy ... Read more

February 28, 2020February 27, 2020

Cookie Sheet, Muffin Tin, Cardboard: A Lesson for Rare Disease Week

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

Science projects at home are often cause for consternation. We’ve all been there: Where do we find the supplies, where do we set up, and what sort of mess ... Read more

February 27, 2020February 25, 2020

Managing Multiple Hemophilia Diagnoses: How My Family Responded

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

As I mentioned in an earlier column, the news that my firstborn son had hemophilia caught my wife and me entirely off guard. When we spoke with the obstetrician, ... Read more

February 26, 2020February 24, 2020

I’m Grateful for Childhood Friends Who Showed They Care

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

Looking back at my younger self, I don’t think I fully appreciated the help I received from others around me during my school experience. Being one of the few ... Read more

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