Laurie Kelley

The Birth of a Russian Child with Hemophilia; The Death of a Tsar

Laurie Kelley August 10, 2025

Russia continues to be in the news daily, as it continues its war against Ukraine. Russia may go down in history for its heartless attack on Ukraine, but Russia also goes down in history for hemophilia. The most famous hemophilia carrier in history, Queen Victoria, is directly responsible for passing the gene along to her granddaughter, Alix, who in turn gave birth to a Russian baby with hemophilia—a baby who changed the course of world history.

This is why hemophilia is dubbed “The Royal Disease,” for its pedigree that started in Europe with Queen Victoria, and was shared with other European families as prince married princess and princess married prince.

Queen Victoria was a carrier of hemophilia B, and so then was her granddaughter Alix, who married Tsar Nicholas II of Russia. It was well known by then that hemophilia was running in the family.

Alix gave birth to Alexis (or Alexei), after already having four girls. The royal couple got their heir to the throne. But Alexis had hemophilia.

Alexis had no access to clotting factor of course; this was 1904, after all. The royal family came rely on a famous person of ill repute: Rasputin, the mad monk. He had a lascivious reputation but also a track record of helping people in pain, probably through hypnosis. Rasputin became ingratiated into the royal family and helped also to bring down the Russian monarchy. It’s been proposed that Nicholas II was so distracted by his son’s suffering due to hemophilia, that eventually he lost his grip on the monarchy at a time when the Bolshevik Revolution was poised to strike. And it did. It has been proposed that hemophilia changed the course of World War I, and changed the course of history. The Cold War, the Soviet Empire… all find their roots in the royal palace of the Tsar and a little boy with hemophilia.

The last Russian Royal family, including poor Alexis, was assassinated in a cellar in Siberia on July 16, 1918 by the Bolsheviks. There are many excellent books about the Romanovs, but my favorite is Nicholas and Alexandra, by Robert and Suzanne Massie, whose adult son had hemophilia (since cured by liver transplant). A 1971 epic British film was also made, based on the book. Review it here: Nicholas and Alexandra.

I have also written a book about this with illustrations, for young readers. Order Alexis: the Prince Who Had Hemophilia here for your teen with hemophilia.

Words of Wisdom in Troubled Times

Laurie Kelley July 27, 2025

When times are tough, when TV news is devastating, when social media has us distracted and angry…. it’s good to hear comforting, uplifting words. Especially when these words come from someone who knows something about pain, suffering and hope.

Matt Barkdull has been a colleague and friend for decades. He is a community member who also is a licensed therapist. When I saw his 25 Principles, I asked him if we could reprint them here, and he consented. Please download and read, and feel inspired and hopeful.

Matt Barkdull earned a Bachelor’s Degree in Family Science at BYU-Provo and a Master’s Degree in Marriage and Family Therapy at the University of Nebraska-Lincoln in 2001. He also received a post-graduate certification in Medical Family Therapy at the University of Nebraska Medical Center. In 2016, Matt earned an MBA emphasizing strategic management. Seeing the benefits of coaching and helping families resolve extra-therapeutic problems, Matt became licensed as a financial professional and certified as a wellness/life coach. An avid researcher, he founded the Wholeness Integrated Solutions (WIS) model of integrated and collaborative care.

Matt is a published author, national speaker, and a huge patient advocate. Matt and his incredible wife were married in 1995 and are the parents of three wonderful daughters.

25 Principles Learned in Mental Health Care Download

A Tireless Physician, Finally at Rest

Laurie Kelley July 13, 2025

Dr. Carol Kasper was tireless; it seemed nothing could ever slow her down. Working at the hemophilia clinic at Orthopaedic Hospital in Los Angeles, globe-trotting as vice president, medical, for the World Federation of Hemophilia, she effortlessly attended conferences, board meetings, met with patients, conducted research and published. She was a force unto herself.

I recall meeting her and wishing I could be like her, to have her energy and drive; I would never have her intelligence. She was one of the most intelligent women I ever met. The other who fit that description was Renée Paper, an emergency room nurse who had von Willebrand disease. Renée and I became colleagues, then friends, then co-authors. And I learned that Renée had been given a hysterectomy long ago when not properly diagnosed with VWD. It was Dr. Carol Kasper who finally gave her the correct diagnosis, treatment, and changed her life forever.

As the years went on, she gave me compliments on my work, how I conducted my business, and the impact I had made. This made me shine, because coming from her, it was the highest praise I could get.

When I first opened my office in 2002, she was the first person to visit, and she brought a floor plant. I felt bad, because I am known to eventually kill off house plants. But this plant? Still alive to this day.

In her later years, retired, she enjoyed quilting, and apparently still generously donating to bleeding disorder causes, judging from her Facebook page. Here she was, in her 80s, and active on Facebook. She sent me lovely messages from time to time, very supportive and kind.

She passed away on July 8. Her passing leaves a hole in my life with hemophilia. Dr. Kasper was like a giant, in a little five-foot frame. I will miss her so much. Her son Evan wrote:

“She died peacefully and without suffering. She was 89 years old and had lived a wonderful, full and rich life. After an extraordinary career as a leading world figure in research and treatment of hemophilia, her later years were filled with quilting, avid figure-skating fandom, and involvement in the lives of her four grandsons. We will carry her love forward into our lives.”

I hope to keep my humanitarian work for hemophilia going too, as Dr. Kasper, my role model, did, until it’s time to rest as well.

Are Roller Coasters Safe for Hemophilia?

Laurie Kelley June 29, 2025

Ups and Downs of Amusement Parks

Growing up with six active brothers, I developed a taste for speed, adventure and excitement. We had bikes, our woods, and Riverside Park in Agawam, Massachusetts in the 1960s and 70s, now a Six Flags. My favorite ride? The roller coaster. Whether the old fashioned wooden one like the Cannonball, in New Hampshire, or the powerful, green, gigantic Hulk in Islands of Adventure, Florida, the faster and crazier, the better.

But you might want to take some precautions before passing along your love of speed and excitement to your youngster with a bleeding disorder. Are roller coaster rides safe for children with bleeding disorders?

Overall, roller coasters are very safe, if you look at the statistics. From the International Association of Amusement Parks and Attractions (IAAPA) says there are approximately 0.9 injuries per million rides. In 2021, there were an estimated 1,200 ride-related injuries in the U.S. The most common injury involves the head or neck.

How can you play it safe?

First, take some common-sense precautions:

Obey the listed age, height, weight, and health restrictions. Your child grows each year and has grown since last year — are they tall enough to qualify as a rider?
Watch the ride first, so you know what to expect. See how riders are loaded and unloaded. Watch how the safety belts are fastened first, so that when you get on the ride, you know what to do.
Ask the park employee to double check your safety belt.
Keep you head, hands, arms legs and feet inside the ride at all times. Just like they tell you.
Keep your eyes looking forward and your head up to protect your neck from injury. Roller coasters are prone to sudden accelerations and abrupt changes in direction. Keep you head up and looking forward to ensure the sudden jerks don’t hurt your neck. (I actually have cradled mine against the head rest to prevent the neck-snapping turns)
Wait until instructed to remove your safety belt/lap bars/shoulder harnesses and exit the ride.
Take frequent breaks between roller coaster rides. Give your body time to rest and readjust before jumping onto the next round. If you feel unwell, dizzy, or nauseated, don’t ride!
Don’t get on a ride that looks poorly maintained. Be wary of those road-side, temporary carnivals.
Don’t stand while a ride is in motion. Even if the ride stops mid-ride, stay seated, and wait for an operator to give further instructions.

And the best piece of advice?

Give your child a prophy dose before going to the park. Bring his supplies with you… just in case. Have him wear his medical ID jewelry. And know where the nearest HTC is if you are far from home.

A roller coaster ride is one up and down in life you can have safe fun with!

The Big, Beautiful… Bungle? Bomb? Benefit?

Laurie Kelley June 15, 2025

How would you describe the US budget bill, that is currently working its way through Congress? Do you know about it?

Believe it or not, its official name is the One Big Beautiful Bill Act of 2025 (OBBBA), popularized by Republican House Speaker Mike Johnson. It is a House Republican proposal for reconciliation, which would allow for expedited consideration of certain budgetary measures.

With all the distracting trouble in the world—protests, Middle East attacks, assassinations over the weekend—it’s actually easy to forget that this budget has not yet been approved. It’s still pending in the Senate. But there are urgent calls by our bleeding disorder community leaders for all of us to consider what’s at stake… and to consider taking action to protect health care budgets that affect us all.

There are tax cuts of various kinds; there are spending cuts of various kinds, and these are the areas that should concern us all. The bill includes various ways to cut spending in Medicaid, food stamps, and student loan repayment programs.

Interestingly, the government’s own Congressional Budget Office (CBO) estimates the bill will add $2.4 trillion to primary deficits over the next ten years. There are concerns by the CBO that the bill could add $1,600 per year to low-income Americans taxes.

The Senate vote will happen before July 4. We have two weeks left to make a difference. You could make a difference, but only if you get educated about the bill.

Go here to learn more: https://www.congress.gov/bill/119th-congress/house-bill/1/text

Click these to learn more: 🔗 How the Bill Increases the Deficit🔗 Smarter, Compassionate Budget Solutions🔗 Medicare Cuts🔗 Medicaid Cuts🔗 Affordable Care Act Cuts🔗 SNAP Cuts

Changing Policies Mean Take Advocacy Action Now!

The Coalition for Hemophilia B has created an excellent Action Sheet to help give you ideas and action items to help protect Medicaid and vital healthcare programs for those living with hemophilia. Consistent, respectful calls to your senators and representative can make a significant difference. Download the Action Sheet here.