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

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Recent items include:

  • When the hands-on hemo mom hears, ‘Don’t worry. I’ve got this.’
  • Raising sons with hemophilia made me feel like a symphony conductor
  • There’s no dress rehearsal for raising children with hemophilia

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hemophilianewstoday.com /4 weeks ago

When the hands-on hemo mom hears, ‘Don’t worry. I’ve got this.’

My son Caeleb recently had his wisdom teeth removed. Caeleb has severe hemophilia A with an inhibitor, but hemophilia hasn’t been the main focus in his life for years. Nevertheless...

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hemophilianewstoday.com /1 month ago

Raising sons with hemophilia made me feel like a symphony conductor

As a classically trained oboist, I enjoy attending the symphony, except when Wagner is on the program. I like to get there early and watch what happens before the performance start...

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hemophilianewstoday.com /1 month ago

There’s no dress rehearsal for raising children with hemophilia

My oldest son, Julian, is a working actor in a touring production. For this show, he is trained to perform both male lead roles. Over the last six months, he performed one role, an...

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hemophilianewstoday.com /2 weeks ago

After the challenges of hemophilia, a well-deserved ‘sacred silence’

I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges...

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hemophilianewstoday.com /6 days ago

What my sons wish people understood about hemophilia, part 1

First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a prof...

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hemophilianewstoday.com /3 weeks ago

Why we’ll keep pushing for better access to factor replacement therapy

Due to my husband Jared’s severe hemophilia B, we keep a small, personal supply of factor replacement therapy in our refrigerator that typically is enough to cover one bleeding eme...

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hemophilianewstoday.com /4 weeks ago

What living independently with hemophilia really looks like

Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college,...

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hemophilianewstoday.com /1 month 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 /2 weeks ago

Encountering people who don’t understand my son’s hemophilia

Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he...

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hemophilianewstoday.com /3 weeks ago

My son is riding the roller coaster of hemophilia with his arms in the air

Growing up in Houston, I remember the now-defunct amusement park AstroWorld being a significant part of summer for many people. Its star attraction was the Texas Cyclone, a nearly...

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hemophilianewstoday.com /1 month ago

Passing the torch to the next generation of bleeding disorders advocates

More than 30 years ago, my wife, Cazandra, and I began our work in the bleeding disorders community after our oldest son, Julian, was diagnosed with hemophilia. Since then, we have...

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hemophilianewstoday.com /1 month ago

Reliving when I felt trapped underwater and fought to reach the surface

Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always th...

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hemophilianewstoday.com /4 weeks ago

Staying on top of their prophylaxis shows me my sons are responsible

Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor befor...

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hemophilianewstoday.com /4 weeks ago

Hemophilia Management: Emergency Stabilization and Long-Term Strategies

From acute bleeds and inhibitor considerations to long-term approaches. The post Hemophilia Management: Emergency Stabilization and Long-Term Strategies appeared first on Hemophili...

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hemophilianewstoday.com /5 days ago

In life with bleeding disorders, we can’t expect a tidy arc

Hurricane Ian directly hit my condo in 2022. My mother and I evacuated to Orlando, Florida, and couldn’t return for weeks. It was long enough that “recovery” became its own kind of...

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hemophilianewstoday.com /1 month 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

‘Nobody should fight inhibitors alone’: Hope in the hemophilia community

I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom,...

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hemophilianewstoday.com /2 days ago

My husband talks only about himself when he says he’d miss hemophilia

I’ve been thinking lately about how resilience is discussed in the Philippines. After major storms, familiar images circulate online: weddings continuing despite floodwater inside...

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hemophilianewstoday.com /2 weeks ago

Our approach to talking with children about being a hemophilia carrier

Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared...

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hemophilianewstoday.com /1 month ago

Finding stability in Ehlers-Danlos and hemophilia through physical therapy

Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, t...

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hemophilianewstoday.com /3 weeks ago

My son’s first job was a chance to show that chronic pain won’t always win

My son Caeleb has hemophilia, and when he was in high school, he dealt with a lot of chronic pain, the result of continuous bleeding episodes into his right knee and ankle. He miss...

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hemophilianewstoday.com /4 weeks ago

Management Challenges in Hemophilia: From Delayed Bleeding to Chronic Injury

Factor deficiencies can disrupt clot formation, causing bleeding complications, arthropathy, the development of inhibitors, and long-term disease burden. The post Management Challe...

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hemophilianewstoday.com /1 month ago

Finding our balance means taking turns carrying what the other cannot

The scream echoed through our house, loud enough to rattle the windows. For a moment, I wondered what the neighbors must have thought. My husband and I were walking up the stairs w...

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hemophilianewstoday.com /1 day ago

When your hemophilia treatment stops working: What to do next

If your hemophilia treatment stops working as expected, an inhibitor may be interfering with clotting factor therapy. Learn the warning signs, testing process, and alternative trea...

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