Laurie Kelley

Stormy Weather Ahead

Laurie Kelley November 2, 2025

In September I visited the Arctic, a rare opportunity to see the top of the world—a hostile yet remarkably and singularly beautiful environment. On board our ship were many scientists, some of whom were conducting research into pollution of the ice. Form their presentations, I learned a tremendous amount about how the planet is warming, and the impact of global warming on glaciers. Glaciers are melting. This is indisputable.

And with these changes at 90° North, the entire planet is affected in various ways. One way is the variability and instability of the weather. You may have noticed. More frequent droughts in some regions, more monsoons, earthquakes and hurricanes in others. And the intensity of these storms is increasing.

Last year at this time, Valencia, Spain was terrorized by a horrific flood, comparable to the effects of a tsunami. Hundreds died. We in the United States were reeling from Hurricane Milton, one of the deadliest storms to hit Florida on record. There were also floods in Nepal and the Sudan, and a hurricane in Mexico and again, Florida.

And just last week, Hurricane Melissa pummeled Jamaica and other parts of the Caribbean, deemed the worst hurricane it has ever experienced. I have many friends in Jamaica who are part of the bleeding disorder. I sometimes send factor to them, and have visited twice over the years, to help resurrect the patient group and to assess needs.

One thing the global bleeding disorder community is not good at is disaster relief. When Nepal experienced a devastating earthquake in 2016, I was the first on the scene—six months after the earthquake. It’s shocking that we cannot do better, when so many patients live in disaster-prone regions, and live in poverty.

We in the US have it better but we still have a long way to go before we can respond well to disasters affecting US bleeding disorder patients. So this leaves it up to each of us to be prepared for disasters. What should you do now to prepare?

Know the geography and weather patterns where you live. California has many geographical faults that cause earthquakes; wildfires are particularly bad. The Midwest states of Texas, Nebraska and Kansas are dubbed “tornado alley” for their frequent and sometimes devastating tornadoes. The northeast has “nor-easters” every ten years or so. And Florida is hit with hurricanes that often originate off the coast or in the Caribbean Sea. Here in the east, September and October are hurricane season moths. Normally we are lashed with the tail end of a Caribbean-originated hurricane. Pay attention to weather forecasts daily.
Ensure you have factor and ancillaries on hand at all times. When storms hit, you often are not able to travel, and face power outages. Your factor supplier may not be able to bring you factor, and you may not be able to contact them. Keep at least 10 doses in your fridge at all times, and plenty of ancillaries.
Keep candles and flashlights ready, with fresh batteries. Keep your cell phone charged, and have a power bank charged and ready if your phone runs low on power.
Know your local emergency numbers, in case you need to be evacuated due to your medical condition. Panicked callers have overwhelmed 911 services, so you may not be able to always reach help when you need it.

We still have one month left of hurricane season, which could yield up to 19 named storms and five major hurricanes, according to the National Oceanic and atmospheric administration. That’s above the annual average of 14 named storms, partly as a result of higher ocean temperatures and lower trade winds. Disaster preparation efforts have been affected by staffing cuts and the current administration’s vow to dismantle the Federal Emergency Management agency. The agency has lost at least 25% of its full time staff. Without federal funds, many states may not be able to assist people affected by disasters.

As soon as you know that you are in “weather season,” and then hear that a storm is developing, be prepared for a worst-case scenario. Keep updated with popular apps like RadarOmega and FEMA App. Ask your local bleeding disorder organization what they suggest for being prepared and for help during a natural disaster. Suggest that there is a presentation on it by a local expert for yoru next annual meeting.

Visit this National Bleeding Disorders Foundation’s page to learn of resources available. Read MASAC’s Document $227 policy on having a home factor supply to prepare for emergencies, And also visit the Hemophilia Alliance’s Disaster Relief Fund page to learn how this group assists people affected by disaster. Read a great article here on CNN of what to have in an emergency.

Weather is predicted to become more unstable and intense in the coming years as the glaciers melt. Now is the time to educate yourself and prepare.

Blood and the Most Odious Demon

Laurie Kelley October 19, 2025

Blood is the giver of life… and legends. It’s prominent in fairy tales, detective stories, myths, medicine and our business of hemophilia. It’s a favorite for dressing up costumes at Halloween time, like now. Blood holds such a fascination by us humans, so it’s natural that there are misconceptions. I’m currently rereading the classic Dracula and was amused to read how Dr. Van Helsing, a professor from the Netherlands and expert on the nosferatu, wants to help young lady Lucy, a victim of Dracula’s nightly blood draining, by giving her a transfusion of blood. “Is it you or me?” he asks Dr. John Steward, about which one of them should roll up their sleeve to donate; Steward who replies, “I am younger and stronger, Professor. It must be me.” Steward offers his blood based on the concept of vitalism, that blood contains the traits of the being in which it flowed—a concept that was unchallenged for fifteen hundred years. Later in the book, Van Helsing says to Lucy’s fiancé Arthur, “John was to give his blood, as he is the more young and strong than me…. But now you are here, you are more good than us, old or young, who toil much in the world of thought. Our nerves are not so calm and our blood so bright than yours!”

So Arthur becomes the better blood donor because he is calm and not scholarly! Of course, this is nonsense, but author Bram Stoker fell for the widespread belief in vitalism when he wrote his book in 1897. Dracula isn’t so picky; he pretty much would drink anyone’s blood.

Douglas Starr tells us in his landmark book Blood that the Egyptians saw blood as the carrier of the vital human spirit, and would bathe in it to restore themselves. Roman gladiators were said to have drunk the blood of their opponents to ingest their strength. “Our own culture attaches great value to blood, with the blood of Christ as among the holiest sacraments, blood libel as the most insidious slander, the blood-drinking vampire as the most odious demon.”

And blood becomes a problem when someone has hemophilia or von Willebrand Disease. A microscopic protein is either missing or malfunctioning. In the 1970s and 1980s, doctors would replace the missing protein with products made from human blood. But widespread contamination with HIV led to the nation’s blood supply being destroyed. While scientists eventually produced recombinant blood-clotting products in 1992, the damage was done. An estimate 10,000 with hemophilia would die—50% of the US hemophilia community.

Rather than secure eternal spiritual life by consuming wine that has been transformed into Christ’s blood during Christian Mass, Dracula drinks human blood to extend his physical life through the centuries. We now use ultra-safe, genetically-engineered blood-clotting products to clot blood that does not clot on its own, to extend our physical life… and enjoy Halloween, vampires and all!

The Airplane Motor Named Factor

Laurie Kelley October 6, 2025

I’ve just returned from an amazing three-week trip to the Arctic. Specifically, a transpolar trip: from Spitsbergen, Norway (the highest human settlement in the world) to the North Pole, then down to Nome, Alaska. As this was as much a scientific trip as leisure, I studied for months about polar exploration of the Arctic in the 1800s and 1900s. Polar exploration is a passion of mine, and this was a chance to see the barren, hostile yet beautiful world seen by the early explorers.

Yet as of 1926, no one could definitely say what exactly was at the North Pole. Was it all water? Was there an ice cap? Was there land?

The North Pole was considered the last geographic trophy to nab. A million square miles that no one had seen; a huge blank space on the map at the turn of the twentieth century.

There were long and painful dog sled voyages, and sea voyages. The names Nansen, Amundsen, Peary and Cook go down in history.

But a major development was using airplanes. Imagine flying to the North Pole! And if one did, would there be enough fuel to return?

The birth of aviation is intrinsically linked to attempts to reach the Arctic. Besides dogsled and sailing ships, airships (dirigibles, or “blimps”) had been tried in 1897, first by a Swedish engineer, S.A. Andrée, which ended early and in the deaths of those on board, and then by American journalist Walter Wellman, on the airship called the America, in 1907 and 1909. This didn’t work either, though Wellman went on to live his life as a famous and successful journalist.

The “Great War”—World War I— accelerated the development of aviation, and fostered the idea to fly to the North Pole. By then Dr. Frederick Cook claimed to have reached the Pole in 1908 by sled, as did Robert Peary in 1909, but both claims were disputed and later refuted.

Admiral Richard Byrd proposed to retrace the route Peary had taken to the pole, but from the air. By March 1925 Byrd had a plan: possibly landing a seaplane in the Arctic pack in July and August and refuel, something that had never been done before. This was exciting, as aviation to the Arctic could open new trade routes, vital to world economy. And if Byrd found land, the U.S. could claim it.

He had competition. Norwegian Roald Amundsen was the famed explorer who had already been first to the South Pole and through the Northwest Passage. The Norwegian had already tried flying to the Pole, using two huge, all-metal flying boats made by Dornier, a German manufacturer. On May 21, 1925 Roald Amundsen and Lincoln Ellsworth took off from King’s Bay, Spitsbergen. I was privileged to see the place where they departed. One plane crashed, though all the men survived. They spent a month on an ice floe, with no radio contact, but cleared a crude runway and flew their last plane back with all the men on board. It was heroic.

Then it was Richard Byrd’s turn. By 1926, Byrd also planned to reach the Pole by plane.

Meanwhile, Amundsen had not given up. He prepared to reach the Pole by airship, in the Norge (Norway). They would actually take off within days of one another, from the same place—Kings Bay, Spitsbergen, Norway. Who would make it first?

What surprised me, reading about the race to the Pole, was learning that a thirty-five-year-old Dutchman named Anthony Herman Gerard Fokker, who became rich equipping the “Bloody Red Baron” von Richthofen during World War I, took his company’s top single-engine monoplane, the “F-VIIA,” and added two more engines to make it the “Fokker trimotor.” It was the first airplane out of seventeen to return to Ford Airport in Dearborn, Michigan during a seven-day, 1,900-mile promotional flight sponsored by Edsel Ford.

Byrd was friends with Edsel Ford, but had to purchase a trimotor from Fokker for his Arctic expedition after a fire at the Ford plant. The range of the trimotor was only half that of Amundsen’s dirigible. Byrd purchased a “J-4,” and Fokker installed the same trimotor used in the Ford promotional tour. Despite buying the engine from Fokker, Byrd honored Ford, his chief benefactor, by naming his plane for the third of Edsel’s four children—his only daughter, three-year-old Josephine. “JOSEPHINE FORD” was painted above “BYRD ARCTIC EXPEDITION” on the fuselage, along with “FOKKER.”

While Byrd completed his roundtrip to the Arctic on May 9, 1925 under incredibly difficult circumstances, he was not awarded the prize of claiming the Pole. It was difficult to measure accuracy under the conditions. Instead, the prize went to Amundsen, who flew for Norway in the Italian-made dirigible Norge, and who was able to say definitely, once and for all, that he reached the North Pole. This is acknowledged in history now.

But think of it! Byrd, a U.S. Navy admiral, engineer, and pilot, flew a plane to the North Pole with a trimotor that used the same nomenclature used for the groundbreaking, life-saving medicine infused by people with hemophilia and inhibitors—Novo Nordisk’s NovoSeven, activated factor VII, shortened to FVIIa.

Photo credit: The Josephine Ford, from the Collections of Henry Ford

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.