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

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Recent items include:

  • We must talk about the long arc of chronic illness, not just the first part
  • Celebrating hemophilia progress while remembering our community’s past
  • What looks good and feels right: Getting dressed with a bleeding disorder

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hemophilianewstoday.com /2 weeks ago

We must talk about the long arc of chronic illness, not just the first part

Nobody warned me that aging with a bleeding disorder would feel like negotiating with a body that keeps changing the terms. I have von Willebrand disease, hemophilia B, and Ehlers-...

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hemophilianewstoday.com /1 month ago

Celebrating hemophilia progress while remembering our community’s past

I just returned from the Hemophilia Federation of America (HFA) Symposium in New Orleans, and like many gatherings in the bleeding disorders community, it left me inspired, reflect...

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hemophilianewstoday.com /1 month ago

What looks good and feels right: Getting dressed with a bleeding disorder

Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens...

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hemophilianewstoday.com /1 month ago

With factor IX deficiency, saying I have ‘hemophilia’ isn’t specific enough

In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combinatio...

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hemophilianewstoday.com /4 weeks ago

The importance of listening to those of us with bleeding disorders

“I don’t see blood, so you must not be bleeding.” For people with bleeding disorders, that kind of thinking isn’t just frustrating; it can be dangerous. Bleeding isn’t always visib...

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hemophilianewstoday.com /1 month ago

The generosity of plasma donors has a profound impact on patients like me

There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (an...

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hemophilianewstoday.com /1 day 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 /3 weeks ago

I never got the chance to ask my mom about hemophilia in our family

Certain moments stay with me forever. I remember walking down the church aisle with my dad toward my future spouse, the scent of my babies when I first held them, and the bishop’s...

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hemophilianewstoday.com /4 days 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 week 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 /1 month ago

I’m no Nadia Comaneci, but I am a mother of young men with hemophilia

Watching gymnasts Nadia Comaneci and Olga Korbut in the 1976 Olympic Games inspired me to do front rolls in my backyard. I knew back flips and aerial twirls weren’t in my reach, so...

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hemophilianewstoday.com /1 week 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 /3 weeks ago

Finally, a webinar that addresses von Willebrand disease treatment

For much of my life in the bleeding disorders community, I’ve seen remarkable innovation happen around me. Hemophilia treatment has changed dramatically. Products have become longe...

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hemophilianewstoday.com /1 week 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

Hemophilia has taught me to pause before judging other people

In a society where reality television is king, passing judgment is easier than ever. Contestants in competitions such as “Dancing with the Stars” and “American Idol” are eager to h...

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hemophilianewstoday.com /1 month ago

Paying attention to how we treat children with an invisible illness

Before I ever met my husband, Jared, he had learned to adapt well to having severe hemophilia B and seizures. But one moment from his childhood still finds its way back to him. On...

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hemophilianewstoday.com /2 days 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

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

How my sons define freedom as young men with hemophilia

One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems...

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hemophilianewstoday.com /3 weeks ago

Maintaining an exercise regimen benefits my husband with hemophilia

My husband, Jared, first set foot in a gym just months into our relationship. It wasn’t some grand fitness decision — just curiosity. What would it feel like to work out? That ques...

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hemophilianewstoday.com /1 month ago

Struggling with loneliness in the early days of my sons’ hemophilia

Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the u...

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hemophilianewstoday.com /1 month ago

Guest Voice: What I’ve gained from doing my own hemophilia infusions

Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own. At first, doubt...

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hemophilianewstoday.com /3 weeks ago

This Mother’s Day, I remember 3 great mothers in my life

In observance of Mother’s Day, I can’t help but think about three amazing women who have proven their strength and dedication to my sons, Julian and Caeleb, who both live with hemo...

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hemophilianewstoday.com /1 month ago

Supporting mental health when hemophilia treatment isn’t guaranteed

A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental...

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