Latest updates for Hemophilia 24/7 - A Column By Cazandra Campos-Macdonald

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Recent items include:

  • My sons navigated hemophilia like two young boys learning to swim
  • The bleeding disorders community eased the isolation of hemophilia
  • In our family, memories of tough hemophilia days don’t always align

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hemophilianewstoday.com /4 weeks ago

My sons navigated hemophilia like two young boys learning to swim

The swimming pool was the best place to be for a young girl growing up in the hot Texas summers. I’d hand over my crumpled dollar at the counter and spend the whole day there. Afte...

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hemophilianewstoday.com /1 week ago

The bleeding disorders community eased the isolation of hemophilia

I grew up in a mostly white suburb of Houston. My dad, who was of Mexican descent and had dark skin, spoke English as his second language. He worked hard, went to school, and earne...

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hemophilianewstoday.com /1 month ago

In our family, memories of tough hemophilia days don’t always align

At work, I’m the second-oldest on my team. With our ages ranging from mid-20s to early 50s, we each bring different life experiences. I’m always interested in hearing the Gen Z and...

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hemophilianewstoday.com /1 month ago

Raising sons with hemophilia challenged my perfectionist tendencies

I struggle with something that affects me on every level — spiritually, emotionally, and physically. It’s called perfectionism. My perfectionism started when I was a kid. I used to...

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hemophilianewstoday.com /6 days ago

The bleeding disorders community reminds us we are not alone

My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me d...

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hemophilianewstoday.com /1 month ago

Different approaches in hemophilia care can lead to the same goal

As we approach our one-year anniversary in our home in Las Cruces, New Mexico, I want to spend more time on our beautiful, shaded back patio. We just got a new flat-top griddle, wh...

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hemophilianewstoday.com /1 month ago

Our toolkit for living with hemophilia is bigger than a medical bag

When people think about hemophilia, it’s likely they usually think about clotting factor, infusions, bleeds, emergency rooms, and hospital visits. And yes, those things matter — a...

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hemophilianewstoday.com /1 month ago

Deciding when to tell people about my hemophillia

I once arrived late to an event and offered no explanation. I’d been standing at my door, ready to go, when I realized I needed to infuse factor VIII before I could proceed safely....

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hemophilianewstoday.com /3 weeks ago

What the years of raising sons with hemophilia have taught me

I use Spotify to listen to my favorite podcasts, audiobooks, and music. Downloading what I like is simple, but there’s another fun part: the app makes playlists based on what you l...

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hemophilianewstoday.com /1 week ago

When the son with hemophilia becomes the caregiver to his father

I woke up on Saturday morning and struggled to stand upright. My back had given out, and I could hardly take a step forward. Sunday morning was no better, but I had to prepare for...

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hemophilianewstoday.com /1 week ago

Guest Voice: Using hemophilia pain and tribulation to lift others up

Having severe hemophilia A means everything can be life-threatening. In February, I had a tooth extraction that required sedation, after a year of preparation. It took that long be...

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hemophilianewstoday.com /22 hours ago

We shouldn’t be so quick to judge the things we don’t understand

Many people believe that if a disability or struggle is not visible, it must not be real. I learned this lesson firsthand as I watched my son Caeleb live with severe hemophilia A a...

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hemophilianewstoday.com /1 month ago

Finding strength and sisterhood through hemophilia advocacy

Tracye Hamler shares how her hemophilia diagnosis inspired her to create Free Bleeders and advocate for women with bleeding disorders through community, education, and visibility....

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hemophilianewstoday.com /1 week ago

Advances in treatments show life doesn’t wait, and neither should we

When I was in high school, I wasn’t just excused from gym class; I was prohibited from participating in every sport except swimming. While my classmates learned volleyball, basketb...

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hemophilianewstoday.com /1 month ago

Guest Voice: Finding strength in raising two children with hemophilia

I never thought my life would be like this, but as a mother, I had no choice but to be strong for my children. As a mother of two sons with severe hemophilia A, Lean Archer and Luk...

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hemophilianewstoday.com /1 month ago

Looking back at a traumatic childhood with undiagnosed hemophilia

When I was in the fifth grade, I’d look in the mirror every morning and hate who I saw. I believed I was ugly, unpopular, and weird, and the hand-me-down clothes I wore made me loo...

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hemophilianewstoday.com /2 weeks ago

When job stability became a form of caregiving

When I first started writing for Hemophilia News Today in 2018, I never imagined it would become part of my career. At the time, I was a young woman preparing for marriage and tryi...

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hemophilianewstoday.com /3 weeks ago

I advocate so the people in power hear from someone affected by hemophilia

I’ve been standing in front of my closet longer than I’d like to admit. It’s not vanity. It’s because I know what I want the clothes to do: I want to walk into a marble hallway and...

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hemophilianewstoday.com /1 month ago

Power of connection among HEM caregivers makes difference for mom

Maria de Guzman shares how caring for her two sons with severe hemophilia A has shaped her life, from learning to manage bleeds and prevent injuries to finding strength through com...

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hemophilianewstoday.com /2 days ago

How hemophilia has changed what I expect from my goals

Someone recently told me they thought they were experiencing arrival fallacy. I’d heard the term before. It describes the feeling of reaching a long-awaited goal, only to discover...

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hemophilianewstoday.com /1 month ago

The hidden cost of fear-based parenting for children with hemophilia

If you’re raising a child with hemophilia, I understand the fear. It starts early — before sports, sleepovers, and field trips, and often before they’re old enough to understand th...

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hemophilianewstoday.com /1 month ago

Hemophilia taught me to step away in times of stress

My house is on a cul-de-sac, and right behind my street is undeveloped desert leading up to New Mexico’s Organ Mountains. I love walking on the trails in the open area whenever I f...

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hemophilianewstoday.com /1 month ago

Being present is the best way to support others in times of waiting

I spend a lot of time in the hospital, but not for the reasons most people think. As a hospice chaplain, I sit with patients who are nearing the end of life. It is a privilege to b...

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hemophilianewstoday.com /3 weeks ago

Who gets to tell the hemophilia story?

I’ve noticed something strange over the years: Adults with hemophilia sometimes disappear from conversations that were built for them. I first noticed it in support groups. The lou...

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