Latest updates for Hemophilia And Me – A Column By Jennifer Lynne

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Recent items include:

  • I advocate so the people in power hear from someone affected by hemophilia
  • Advances in treatments show life doesn’t wait, and neither should we
  • Your medical chart has an opinion about you — and you can read it

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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 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

Your medical chart has an opinion about you — and you can read it

I have medical records from my old hemophilia treatment center in Wisconsin dating back to the 1990s. Over the years, those old documents have turned out to be some of the most pow...

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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 /1 month ago

For years, I thought everyone planned their lives around their heavy periods

For most of my childhood and teenage years, I thought everyone planned their lives around their periods the way I did. I wore dark clothes to school, kept my backpack stocked like...

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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 /5 days ago

New MASAC iron guidelines reveal a ‘new normal’ for bleeding disorders

For most of my life, “tired” was the only word I had, and it was never enough. I’d say it to doctors the way you’d mention the weather — a fact so ordinary it wasn’t worth writing...

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hemophilianewstoday.com /1 month ago

Women are still navigating treatments that weren’t designed with us in mind

There are events I know I should attend but talk myself out of. The Bleeding Disorders Foundation of Florida’s special Ladies Tea Luncheon has often been one of them. It’s not beca...

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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

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 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 /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 month ago

Why Pride Month makes me think about my hemophilia family

Every June, my social media feeds fill with rainbows. My LGBTQ+ friends celebrate Pride Month, while others share deeply personal stories about identity, belonging, and acceptance....

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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 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 month ago

The decades of gaslighting behind the untruth of ‘I’m fine’

It happened three times in 48 hours. I didn’t go looking for them — the conversations found me. Three different people from our bleeding disorders community, none knowing about the...

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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 /2 weeks ago

A snapshot by the sea reminds me of my son’s long journey with hemophilia

My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him. In the photo, he was sitting on large rocks...

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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

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 /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 /1 month ago

Women with hemophilia can develop inhibitors, too

In recent years, there has been a massive shift in the understanding that female hemophilia carriers can indeed have the condition themselves. Fellow Hemophilia News Today columnis...

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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 /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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