Laurie Kelley

When We Ignored Mental Health

Laurie Kelley May 3, 2026

A long time ago—maybe too long for parents these days of young children with bleeding disorders but not long enough for those of us with kids born in the 1980s—mental health was not a big issue in our community. Were we healthier then? Have stronger families? Better character?

No. We were entirely focused on survival. It was the HIV era, when half our community was infected and passing away from a strange and insidious disease. Our community rallied, advocated, marched, demanded: safer products, payments for damage done and lives lost.

Then came quieter years: we had home delivery of factor; factor was safer; then recombinant products were introduced. And factor was plentiful.

Then came a Swedish study about joint damage and disease that made America realize that we need to protect our growing kids’ joints. Prophylaxis became our main concern.

Through it all, we didn’t seem to pay a lot of attention to something: mental health. Why would these kids have mental health issues when they had pain killers, HTCs, protection from future joint disease, education rights, safer products, prophy?

Because they are human. And many humans, regardless of life circumstances, can suffer from mental health issues like depression and anxiety. I first noticed this in inhibitor patients. Their path to physical freedom was not like the rest of us. They suffered terribly, still. Excellent products became available, but the high cost put additional and tremendous stress on families. Addiction to pain killers was a threat. We had overlooked all this in our celebration of safer products and prophy.

May is Mental Health Awareness month, so it’s a perfect time to think about mental health challenges that individuals with bleeding disorders and their families may often and still face.

As early as childhood, people with hemophilia may have difficulty forming and maintaining friendships due to hospital visits, perhaps avoiding certain activities that other children are free to enjoy. They may appear “different” because of bruises, needle marks, crutches, swollen joints, and even medical ID jewelry. They may struggle with social isolation, body image issues, and chronic pain, which can contribute to depression. Even within a family, siblings enjoy a certain sense of freedom they cannot.

What can we do? While focusing on preventing bleeds and securing proper medical care—all important—be aware too of potential mental health issues. Limit social media time and engage your child in your local bleeding disorder activities, so he or she can meet peers like them. Ask your HTC social worker what symptoms to identify. Make mental health part of your annual visit. Ask what programs are available in our community that can assist. Mental Health Matters Too is one, and the Bleeding Disorder Substance Use and Mental Health Coalition is another.

During Mental Health Awareness month and beyond, patients, parents, and caregivers should be aware of these mental health challenges. Together, we can support each other—and ourselves—throughout our bleeding disorder communities.

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!