Laurie Kelley

Diagnosing the “Whites”

Laurie Kelley April 19, 2026

World Hemophilia Day, April 17, was celebrated globally on Friday! It’s a time when our community converges to give support, but even more importantly, to promote public awareness of the “royal disease” so that people can be diagnosed and appreciate the needs of those with bleeding disorders. In fact, the theme of this year is diagnosis.

Diagnosis is a key first step to proper treatment. But globally, most people who have bleeding disorders are in developing countries and most go undiagnosed. Diagnosing them is the goal, but that unintentionally creates more problems. The main problem? Lack of clotting factor concentrates with which to treat them.

While our community typically wears red on April 17 to signify blood and our unity by blood, I decided years ago to wear white. Why white?

A widely used hemophilia logo has featured a red and white person standing together in unity. The red represents those with access to factor; the white, those without. And that’s why I wear white. To represent the people I serve most, in developing countries where little to no factor exists, or where donations of factor are not a consistent or sure thing.

While I raised a child with hemophilia, I provided books and newsletters to educate those in the US about hemophilia, and how to access the care they needed. Now, I devote all my time to helping those in developing countries, the “white” part of the logo. One way I do this is to provide funding for surgeries. Untreated bleeding can lead to a deterioration of joints; blood is acidic and eats away at cartilage, leaving a person with arthritis. A new knee can mean a new life to someone in a developing country with a bleeding disorder.

Here is Bommaiah, who received a new knee, with our funding and help from the Chennai, India, Chapter of the Hemophilia Federation (India). That’s my best celebration of World Hemophilia Day yet!

A Saint with Hemophilia

Laurie Kelley April 5, 2026

For Easter evening, consider a modern-day saint who had hemophilia. Tsarevich Alexei Nikolaevich, the son of Tsar Nicholas II, the last tsar of Russia, is considered a saint in the Russian Orthodox Church. He was canonized as a passion bearer (a saint who faces death in a Christ-like manner) by the Russian Orthodox Church in 2000, along with his parents and sisters.

And read this beautiful but poignant poem about him, in the book Mrs Romanov, by Lori Cayer, 2018. Included in the collection of 92 poems, comprising a biography of Tsarina Alexandra Feodorovna, is the following poem about Alexei:

When he bleeds, there is so little blood

like guilt in a culpable soul, the bleeding takes place

inside the case of skin, molten bruises hot to the touch

it fills and stretches where there is no space for fluid

his knee a reddish-purple melon about to split

pain takes him ghostly under to the deathplace

his blackened eyes soot out the light

all the ways he can die without spilling a drop

what can be done is nothing but bed or a rolling chair

his ankle a wineskin full to bursting

he is purple-black, red-yellow

a bruise-garden beneath his clothes

for weeks a leg thick and unbendable as a carpet roll

when it stops and he learns to walk again

he is a normal boy

a lifelike puppet with joints of loose gravel

he is a crucible of eggshells

what can be done

is nothing

This book review was submitted by Richard Atwood of North Carolina who adds, “The award-winning poet and editor lives in Winnipeg. Her family tree originated in the Slavic region and contains hemophilia A.”

You can also order our children’s book on Alexis: The Prince Who Had Hemophilia.

The Not-So-Royal Disease

Laurie Kelley March 22, 2026

It’s March—Bleeding Disorder Awareness Month!

For most people, hemophilia is an obscure disorder, associated with royalty. In fact, it is erroneously dubbed “The Royal Disease.” But this is a fallacy. It is true that hemophilia was once linked to the royal families of Europe, thanks to the most famous carrier of the hemophilia gene: Queen Victoria of England. She was, until Queen Elizabeth II, who passed away at age 96 in 2022, surpassed her, the longest ruling monarch in history, at 63 years and 216 days. Queen Victoria, a known carrier of factor IX deficiency, also called hemophilia B, was Queen Elizabeth II’s great-great-grandmother. Queen Elizabeth II was the mother of the current king, King Charles II, father of William and Harry.

Queen Victoria had nine children; one son, Leopold, had hemophilia. He passed the carrier gene to his daughter Alice. Descendants of Victoria would marry into the royal families of Russia, Spain, and Germany, and have children with hemophilia. One famous child from this lineage was Alexei, Prince of Russia, son of Tsar Nicolas II. This royal family was killed by the Bolsheviks on July 18,1918.

Victoria and her descendants truly put hemophilia on the map. And that’s where we get the moniker “Royal Disease.”

Hemophilia is no longer known to be present in any European royal family. Since Queen Elizabeth II had no hemophilia in her direct lineage, neither Charles nor his sons, William and Harry, have hemophilia or were ever at risk of inheriting it. We are happy none of them have hemophilia, but even if they did, with the excellent treatments we have today, it would not interfere much with any royal duties.

Hemophilia may still be associated with royalty but in truth, anyone can get hemophilia—rich or poor, famous or unknown.

Order a copy of Alexis: The Prince Who Had Hemophilia to learn more!

Catch Their Eye: Visuals Matter!

Laurie Kelley March 8, 2026

Almost all humans, regardless of culture or literacy level, absorb information best when it’s presented visually. Advertisers know this well: they want us to buy what they’re selling, so they must grab our attention quickly using colorful, creative, emotional images that persuade us to act immediately. This is even more important currently, given how quickly people scroll and are bombarded with ads and shows.

Visuals can include posters, memes, slides and photos.

When does the bleeding disorder community use visuals? Well, it’s March—Hemophilia Awareness Month, now referred to as Bleeding Disorders Awareness Month. You might be trying to get people’s attention to educate them about hemophilia, in order to secure donations, or to advocate for better health care. Visuals get attention: they can help educate. But mostly, they can or should generate emotions. You need to decide what emotions you want to generate with your visual.

Here are a few tips for creating effective visuals:

Photos: Be sure to capture life and movement—children are always captivating—and varying camera angles. Avoid long-distance shots. Place photos in several locations on the page, or angled to create interest. Don’t overdo it! Graphics can be fun, but may clutter the page. The more photos, the less effective they are. Keep them to a minimum so your readers can easily absorb your information.

Color: Certain emotions can be associated with certain colors. Red is the color universally used in the bleeding disorder community for obvious reasons. But look at these and ask: what emotions do I want felt when people look at my visual?

Red: power, danger, intensity, life, impulsiveness, blood, passion, speed

Orange: power, energy, fire, warmth, cheerfulness

Blue: calm, peace, tradition, spirituality, water

Green: growth, health, money, balance, quiet, nature, environment

Black: power, authority, mystery, evil, death

Gray: elegant, established, classic, mature, intelligent

Yellow: wisdom, warmth, cheerfulness, idealism, caution, energy, speed

Brown: earthy, basic, simple, plain, natural

White: pure, peaceful, cold, clean, honest

Purple: royal, valuable, ceremonial, traditional

Typeface: Even though you may be designing a visual, you may use some words. Typeface refers to a distinct design of characters and symbols, and fonts, like Arial or Times New Roman. Typeface is available in different weights and styles. Weight refers to the thickness of lines used to form the letters; heavier weights are thicker and look darker. Style or font refers to a variation in the basic design, like bold or italic. Make sure the typeface you choose is readable— avoid fancy italics or script. Choose one that produces the positive associations that contribute to your message in the visual.

Look at the great visuals below, and ask yourself: What do I feel when I view each one? Which ones am I drawn to, and why? Which are most effective for educating, and why?

Good luck creating your visual for Hemophilia Awareness Month, and maybe in April for World Hemophilia Day on April 17!

Music: Something That Outlives It All

Laurie Kelley February 22, 2026

I’ve always loved music. I was raised with classical, took piano lessons for years and later discovered rock (the best years, 70s!), then Disco in college (I was a Disco Queen!), then Disney Tunes when I raised children, then David Bowie, Queen, Metallica, Disturbed and back to the basics: The Who, Stones, Doors, and threw in some fun stadium rock like AC/DC and Guns N’ Roses.

I love to know about musicians in our hemophilia community, of which there are quite a few! But one is right in our neck of the country. Francis Beaudoin contacted me to donate factor, and somehow we chatted about music. He lives here in New England; in fact, his mother was once president of the New England Hemophilia Association.

Then he sent me links to some of his songs. I was drawn in by the lyrics: they are powerful, clear, and so heartfelt. There are songs about overcoming hemophilia, but also about the political landscape today. Such talent, both in songwriting and in lyrics. He writes from what he knows: pain, limitations, learning to treasure the important things, and overcoming heardship. With his permission, I wanted to share his work with our community.

Francis writes: “I was born with severe hemophilia, and it has shaped the course of my life in ways both visible and invisible. There were many limitations placed on what I could do physically and professionally. I was not able to build financial wealth to leave behind for my family. But I realized I could leave something else. I could leave this archive [of music].

“This collection exists as a legacy for my wife and my children. It is something they can return to long after I am gone. It is a record of my thoughts, my emotions, my struggles, and my strength. It is a way for them to know who I was, not just through memory, but through my own words.

“If someone reads or listens to this archive decades from now, I hope they feel something real. I hope it reminds them of their own life. I hope they see that even though I lived with disability, and even though I faced many emotional and physical challenges, I endured. I adapted. I continued forward.

“I was not a quitter. This archive is proof of that.

“It is also a reminder to myself and to anyone who encounters it: never deny who you are, and always strive to become better than you were yesterday. God had faith in me. Because of that, I learned to have faith in myself.”

Like his lyrics, which can reflect gentle emotions that run deep, his music too can start soft, with a guitar and excellent singer, but swell louder and more powerful as drums and other instruments join in. This is music to connect to, through shared experiences in hemophilia, but also through feelings that we all have in this time of uncertainty in the United States. With that, the song I really love is “Unity: We All Belong.”

Please check out Francis’s songs, listen to them, see what speaks to you, and which songs you feel most connected to. There is always an element of hope and overcoming in them, like the lyrics here from the song “Anatomy”:

I am more than bone and fracture,

More than time’s slow capture,

Cells may fade and parts may fall,

But something in me outlives it all.

Francis’s music will certainly live on, as all music does.

Check out Francis’s music on YouTube:

You can search for Francis Beaudoin’s music on Apple Music, iHeart Radio, Spotify, Amazon Music and YouTube Music.