Laurie Kelley

First Documentation of VWD?

Laurie Kelley September 21, 2025

Women with bleeding disorders are finally getting the attention they deserve and need in our community. Doctors and patients are often clued in when women present with menorrhagia. But when was menorrhagia, and quite possibly von Willebrand disease, first documented in history?

Our dedicated archivist, Richard Atwood of North Carolina, writes the following review of a book you may want to read.

Following the publication of the text Fierce: Women of the Bible and Their Stories of Violence, Mercy, Bravery, Wisdom, Sex, and Salvation, Alice Connor published Brave: Women of the Bible and Their Stories of Grief, Mercy, Folly, Joy, Sex, and Redemption. The subtitles are telling. In Brave, the author includes the story of an unnamed hemorrhaging woman who is mentioned in three gospel accounts: Matthew 9:20-22; Mark 5:25-34; and Luke 8:43-48 (p. 179).

To personalize this unnamed woman, Connor calls her Talia, meaning “gentle dew from heaven” in Hebrew. Apparently, Talia suffers from hemorrhages for twleve years. She spends all her money on doctors who cannot help her. Now exhausted, in pain, impoverished, and socially outcast, Talia is desperate to be healed. Afraid to speak to, or in awe of, the faith healer Jesus as he walks by, Talia reaches out to touch the fringe of his cloak. Mark and Luke relate that Talia is immediately healed by touching the robe. Matthew relates that when Jesus speaks, Talia is healed. All three Gospels confirm that Jesus says Talia’s faith healed the hemorrhaging (pp. 158-159). Healing miracles are sudden, unexplainable recoveries, even when women’s healthy and unhealthy bleeding is considered impure, or ritually unclean (p. 162)

The author mentions causes for prolonged bleeding in women, such as hemophilia and cancer, yet focuses on menorrhagia as the cause of bleeding for Talia. Menorrhagia is defined as a menstrual period lasting longer than seven days. This condition affects 5% of people who menstruate (p. 158). There is no clue in the gospel accounts for the location of Talia’s hemorrhaging. The author has a longer discussion on faith.

This text is enlightening from its in-depth descriptions of women in the Bible, and entertaining from the author’s wry humor. The book includes three pages for The Biblical Stories Themselves and Where to Find Them, five pages for Homework (a.k.a.) Ideas for Further Reading; and three pages for Notes. All the similarities and the differences found in the three gospel accounts of the unnamed woman touching the hem need to be compared and contrasted. Hemophilia and other bleeding disorders do not receive enough attention in the differential diagnosis for the prolonged hemorrhaging in the unnamed woman. The diagnosis of menorrhagia, and blaming the uterus, are too easily accepted as fact. The author is an Episcopal priest and college chaplain living in Cincinnati, Ohio, not a medical specialist.

Sadly, there is no mention of Sam Cooke, who sang the beautiful song “Touch the Hem of His Garment,” in 1959.

Alice Connor, 2021, Brave: Women of the Bible and Their Stories of Grief, Mercy, Folly, Joy, Sex, and Redemption. Minneapolis, MN: Broadleaf Books. 189 pages.

Bond, James Bond… and Hemophilia

Laurie Kelley September 7, 2025

Blood is a constant in James Bond movies, starting in 1962 with the classic opening, used through fifty years, which shows Bond walking, viewed down the barrel of a gun, Bond firing at shooter, and blood seeping down the screen.

Our amazing archivist Richard Atwood of North Carolina has found an obscure link to James Bond and hemophilia! Author Ian Fleming of England created the Bond character, who appeared in 14 books, starting with Casino Royale in 1953. The 25 movies that followed become cinemagic legends. What does Bond have to do with hemophilia, besides hemophilia being the “Royal Disease”?

In a letter dated April 25, 1962, and addressed to Robin de la Mirrlees, Esq., author Ian Fleming wrote:

“Now to the book. First of all many thanks about haemophilia, it was stupid of me to have got it wrong.” (p. 324).

Ian Fleming contacted many sources to confirm the accuracy of information while in the research/writing phase of his James Bond novel On Her Majesty’s Secret Service (1963). What Ian Fleming initially wrote about haemophilia, and what he got wrong, are unknown. That correspondence is absent. Robin de la Mirrlees (1925-2012), a Scottish aristocrat, to whom he mentioned hemophilia, seems to have been the role model for the fictional James Bond. Robin de la Mirrlees held the title of Rouge Dragon Pursuivant of Arms in Ordinary, The College of Arms, London at the time of their correspondence.

The mention of hemophilia is found in a book by Flemming’s nephew, Fergus Fleming, The Man with the Golden Typewriter: Ian Fleming’s James Bond Letters.* This collection is dated 1952 to 1964. The Ian Fleming correspondence is organized by each movie, with the editor providing background commentary. The title refers to the actual gold typewriter that Ian Fleming acquired in 1952. Ian Fleming died in 1964. Only the first three Bond films were produced while Ian Fleming was still alive.

Hemophilia is also referencedin the novel On Her Majesty’s Secret Service.** While discovering information about the criminal mastermind Ernst Stavro Blofeld, who appears in several of the Bond novels and in the movies, Bond consults with Sable Basilisk at the College of Arms in London. Bond plans to interview Blofeld in Switzerland under the guise of clarifying official business of the College of Arms. Basilisk provides the example of comparing family traits to determine rightful lineage. Basilisk states:

“You see, in some families there is a strong physical characteristic that goes on inevitably from generation to generation. The Habsburg lip is a case in point. So is the tendency to haemophilia among the descendants of the Bourbons. The hawk nose of the Medici is another. A certain royal family has minute, vestigial tails The original maharajahs of Mysore were born with six fingers on each hand. I could go on indefinitely.” (p. 68)

Basilisk then points out that none of Bloefeld’s lineage had lobes in the ears. When they eventually meet in Switzerland, Bond notes that Bloefeld has no lobes (p. 103).

Use of the word “tendency” is confusing when the genetics of hemophilia were known. The movie does not mention hemophilia. Yet movie dialogue highlights ear lobes.

For Bond fans, the love song in the movie On Her Majesty’s Secret Service is “We Have All the Time in the World,” written by John Barry and sung by Louis Armstrong. It was the song I chose for my wedding song in 1986, and also appears at the beginning and end of the final James Bond movie, No Time to Die (2021).

*Fergus Fleming, Editor. The Man with the Golden Typewriter: Ian Fleming’s James Bond Letters. New York, NY: Bloomsbury Publishing, 2015. 392 pages.

**Fleming, Ian. On Her Majesty’s Secret Service. Sevenoaks, Kent, Great Britain: Hodder and Stoughton,1963. 238 pages.

Rockin’ the Pain

Laurie Kelley August 24, 2025

Last night we saw a great concert: Billy Idol, and his famed guitarist Steve Stevens. Energetic, pumped up, still looking and sounding great, Billy Idol used to thrill us, now he amazes us. Despite a devastating motorcycle accident in 1990, in which he almost lost his leg and endured seven operations, he made a come back. (Tidbit: he was supposed to play the part of the New Terminator in T2: Judgment Day, but he was not able to walk. The part went to Robert Patrick).

While recuperating, and for many years later, he reflected on his real problem: drug addiction. And for someone who was now in chronic pain, this was doubly worrisome.

As I watched him rock and cavort on stage, I marveled at his physique and passion. He put on a great show. And to top it off, he is age 70. Seventy! It’s incredible where he was, how he endured and what he does now.

Meanwhile, I was the one in pain, row C, seat 21, with an unrelenting back spasm, that sent thudding pain across my lower back, while compressing nerves that shot electrical currents down my left glute. At times I couldn’t even watch the show, as I was trying desperately to find a standing or sitting position to ease the back pain. Nothing worked.

Chronic pain like this makes me empathize so much with our bleeding disorder community members. Older patients endured the most incredible pain, as untreated bleeds compressed nerves in joints and muscles. The damage those bleeds leave behind is arthropathy, or arthritis, which does not go away. t was easy for our patients to become addicted to painkillers.

Chronic pain requires a different treatment approach than acute pain. Pain medications to treat both acute and chronic pain are often divided into three groups:

1. Non-opioids, including acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs).

2. Opioids (narcotics), including hydrocodone and morphine.

3. Adjuvant analgesics, a loose term for many medications, including some antidepressants and anticonvulsants, originally used to treat conditions other than pain.

Unlike acute pain, chronic pain often doesn’t respond to OTC medications. Even highdose,prescription-only NSAIDs may not reduce the pain; and when used for extended periods, they pose a significant risk of bleeding complications and other serious side effects. So for moderate to severe chronic pain, opioids (narcotics such as morphine and codeine) are the drugs of choice. But the big fear is addiction.

With that in mind, therapies to pursue are non-medication therapy, called Complementary and Alternative Medicine (CAM). These are any adjunct therapy used along with conventional medicine. Here are some of the most common:

Relaxation Therapy. Biofeedback Training

Behavioral Modification. Stress Management Training

Hypnotherapy. Counseling

Acupuncture. Therapeutic Massage

Transcutaneous Electrical Nerve Stimulation (TENS)

Chiropractic manipulation. Ultrasound

As with any procedure, always consult your hemophilia treatment center (HTC) for more information and advice.

I recall attending a Metallica concert in 2018, where the opening act joked that the rockers used to hang out backstage, drinking or smoking before a show. Now they are backstage getting massages and doing yoga, due to their age!

For me, my issues are age-related somewhat and activity-related mostly. Doing too much, too often. I have compressed discs and arthritis in the back. I need to step up my yoga, heating-pad, chiro visits and massages. But this morning, I relented and popped a prednisone tablet for this period of inflammation.

I’m not sure what Billy Idol does, but whatever it is, it’s working!

Don’t take pain lying down: if the 60s, 70s and 80s rockers can get by at their age and with their antics, you can get some relief, in some way too!

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