Laurie Kelley

The Doctor (ChatGPT) is In

Laurie Kelley May 17, 2026

A friend showed me how to use Chat GPT, which was alien to me, when we were in Panama, and she couldn’t get the rental car gas cap open to refuel. She showed a video of the problem to Chat GPT and talked to it like it was a regular person. And she—Chat GPT— talked back—and solved our problem.

I was enthralled, then hooked. I bought a subscription. I made a logo. I made a cartoon of myself. I researched history for a project—boom! I sought answers in science, astronomy, vacations and even rock bands. Answers came not in minutes but seconds! This was saving me hours and hours of research, and gave me new ideas. And it was very personalized, except it keeps calling me Laureen, which only my parents ever did when they were angry with me, or the Sisters of St. Jospeh in Middle School (who probably were mad at me too).

I thought about the days, weeks, month, years spent researching my books Raising a Child with Hemophilia and A Guide to Living with von Willebrand Disease. How much time could have been saved!

Then I wondered if people were turning to Chat GPT for problems they were having with their child with hemophilia. Were they asking things like, “What does a 5% level mean in hemophilia?” “What do I do when he as a multi-color bruise?” “My son just hit his head, What should I do?” Should we use Chat GPT this way? Is it helpful?

And it’s not just patients who are using AI, which is what Chat GPT is. Te-Ping Chen and Chao Deng in The Wall Street Journal say that health care has become the testing ground for Al. Among health systems, 27% are currently paying for commercial Al licenses, triple the rate across the U.S. economy. Doctors and administrators use it to take notes, “field phone calls, and deal with insurance claims” — and give health advice. A study last year found that “Al was better able to identify subtle signs of breast cancer” than human radiologists. And OpenAl, which owns Chat GPT) now inaugurated ChatGPT Health: Al can view medical records and wellness apps for a tailored medical response. More than 40 million people a day already turn to ChatGPT with health questions, and it’s available 24/7.

And usage is rising among patients. According to the New York Times, roughly one in six U.S. adults (and one-quarter of those under 30) use AI chatbots like ChatGPT for medical advice at least once a month. Why? People ask it to explain new symptoms, to research conditions, and to vet a doctor’s advice. Patients get tired of long wait times, short doctor appointments, and high medical bills.

Addressing these needs, some health systems are obtaining commercial AI licenses (27% in early 2026) to help manage patient messages. And as mentioned, OpenAI launched Chat GPT to allow AI to integrate with medical records and apps.

This is a new era, a Wild West, and there are concerns. “This has the potential to “backfire spectacularly,” said Parmy Olson in Bloomberg. People can be wary uploading their health records to a company that could use personal information for advertising purposes. For those of us with hemophilia and other bleeding disorders, this is a bit unnerving. Also, bleeding disorders require expert knowledge, as life and death could be involved. Is AI aware that bleeding disorders can be life threatening, of how serious bleeds can be?

Chat GPT is not infallible. I caught it in a couple of mistakes during my research, which it acknowledged—and then praised me! This made me extra careful whenever I asked it for a definitive, factual-based answer. I think these are called “hallucinations,” when chatbots provide dangerously incorrect information or fabricated advice.

Health care staff and patients look to resolve high prices, accurate information, privacy, and self-knowledge—how to manage a bleeding disorder at home. AI can support a lot and be a great starting point for discussion and question, but nothing can take the place of reaching out to parents who live with a bleeding disorder, in on-line Facebook groups, and most importantly, your hematology staff at your HTC. Other parents and Chatbots are good for supplementary advice and info, but ultimately, you need to see if you HTC hematologist in in.

“Dr. Chat GPT will see you now.” Pg 20 The Week magazine. 2.4.26

Chat GPT created this royalty-free, unique photo for this blog!

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!