Latest updates for Hemowife - A Column By Allyx Formalejo

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Recent items include:

  • Finding our balance means taking turns carrying what the other cannot
  • What living independently with hemophilia really looks like
  • Why we’ll keep pushing for better access to factor replacement therapy

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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 /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 /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 /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 /1 week ago

My husband asks for little, but his needs still deserve room

Lately, I have been trying to spend as little as I reasonably can. I decided to enter a season of aggressively paying down debt. Even writing that makes me slightly uneasy. I have...

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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

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

Disability identity should not require an audition

Recently, I posed a question to Hemophilia News Today readers on social media for Disability Pride Month: “Do you consider hemophilia to be a disability? Yes, no, or somewhere in b...

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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 /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

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 /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

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

‘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 /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

A webinar for women that answers the all-too-familiar question, ‘Now what?’

There’s a moment I’ve heard described so many times that it feels like a shared memory. A woman finally learns the name of the bleeding disorder she’s carried for so many years wit...

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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

The caregiver in me learns when to step back — and when to step in

My youngest son, Caeleb, is working this summer as an office intern at St. Paul’s United Methodist Church in Las Cruces, New Mexico, where I serve as pastor. Even though I am his f...

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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 /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 /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 week ago

Seeking a vein, seeking help, and seeking grace and forgiveness

If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After...

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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

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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