Laurie Kelley

Get Ready for Flu Season

Laurie Kelley November 29, 2025

Having any chronic disorder means taking extra special care of your overall health. As we approach flu season, it’s good to revisit why it’s a good idea to get vaccines. I never had a flu vaccine until about ten years ago. Previously, a person who is in the business of vaccines asked if I had received my flu vaccine. I said no, never, and didn’t need it. Already had the flu and it wasn’t that bad. He replied, “You probably did not have the flu. then” I thought he was just trying to boost his business but guess what? When I legit caught the flu, and was in bed five straight days and couldn’t move, I thought about vaccines. Avoid the high fever, raging thirst, splitting headache, constant joint pain and nausea? I’ll take the shot.

I had Covid too, not too bad, even after having the vaccine. It made me realize that nothing is foolproof but precautions are a good idea.

Recently we had a new baby in the family. The young parents are requesting that we all wash our hands any time we want to pick the baby up. And wear masks if we’ve been traveling. I thought that was a bit overdoing it, but rethinking it, and reading the words of the esteemed Dr. Fauci, I realize that any precautions we can take these days against viruses is good. The hemophilia community knows this after enduring the horror of the 1990s, when HIV was rampant in the blood supply. In Fauci’s own words:

“Chickenpox is a virus. Lots of people have had it, and probably don’t think about it much once the initial illness has passed. But it stays in your body and lives there forever, and maybe when you’re older, you have debilitatingly painful outbreaks of shingles. You don’t just get over this virus in a few weeks, never to have another health effect. We know this because it’s been around for years, and has been studied medically for years.

“Herpes is also a virus. And once someone has it, it stays in your body and lives there forever, and anytime they get a little run down or stressed-out they’re going to have an outbreak. Maybe every time you have a big event coming up (school pictures, job interview, big date) you’re going to get a cold sore. For the rest of your life. You don’t just get over it in a few weeks. We know this because it’s been around for years, and been studied medically for years.

“HIV is a virus. It attacks the immune system and makes the carrier far more vulnerable to other illnesses. It has a list of symptoms and negative health impacts that goes on and on. It was decades before viable treatments were developed that allowed people to live with a reasonable quality of life. Once you have it, it lives in your body forever and there is no cure. Over time, that takes a toll on the body, putting people living with HIV at greater risk for health conditions such as cardiovascular disease, kidney disease, diabetes, bone disease, liver disease, cognitive disorders, and some types of cancer. We know this because it has been around for years, and had been studied medically for years.

“Now with COVID-19, we have a novel virus that spreads rapidly and easily. The full spectrum of symptoms and health effects is only just beginning to be cataloged, much less understood.
So far the symptoms may include:

Fever
Fatigue
Coughing
Pneumonia
Chills/Trembling
Acute respiratory distress
Lung damage (potentially permanent)
Loss of taste (a neurological symptom)
Sore throat
Headaches
Difficulty breathing
Mental confusion
Diarrhea
Nausea or vomiting
Loss of appetite
Swollen eyes
Blood clots
Seizures
Liver damage
Kidney damage
Rash
COVID toes (weird, right?)

“People testing positive for COVID-19 have been documented to be sick even after 60 days. Many people are sick for weeks, get better, and then experience a rapid and sudden flare up and get sick all over again. A man in Seattle was hospitalized for 62 days, and while well enough to be released, still has a long road of recovery ahead of him. Not to mention a $1.1 million medical bill.
Then there is MIS-C. Multisystem inflammatory syndrome in children is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. Children with MIS-C may have a fever and various symptoms, including abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eyes, or feeling extra tired. While rare, it has caused deaths.

“This disease has not been around for years. No one knows yet the long-term health effects, or how it may present itself years down the road for people who have been exposed. We literally ‘do not know’ what we do not know.

“What we DO know [is we] are smart enough to be scared of how easily this is spread, and [we] recommend baseline precautions such as:

Frequent hand-washing
Physical distancing
Reduced social/public contact or interaction
Mask wearing
Covering your cough or sneeze
Avoiding touching your face
Sanitizing frequently touched surfaces

“The more things we can all do to mitigate our risk of exposure, the better off we all are, in my opinion. Not only does it flatten the curve and allow health care providers to maintain levels of service that aren’t immediately and catastrophically overwhelmed; it also reduces unnecessary suffering and deaths, and buys time for the scientific community to study the virus in order to come to a more full understanding of the breadth of its impacts in both the short and long term.”

I already got my flu and shingles vaccine this fall; did you?

’Tis the Season!

Laurie Kelley November 16, 2025

Does your child get excited during the holidays? Have spring fever or cabin fever? Can’t wait for summer vacation, turkey or Santa?

Seasons have an effect on people, whether chemical, biological, or psychological. Your child may experience seasonal bleeding patterns: bleeding happens at certain times of the day, week, month, or year. You may find that your child bleeds more often in the spring and summer, when the days are longer and he is more active.

Or your child may have seasonal bleeding around holidays. The bustle of welcoming relatives, eating sugar-rich foods, and receiving gifts can all create excitement, and this may mean more activity and increased bleeds. Accidents happen, and no one is to blame. What’s most important is treating promptly, so you can get back to the holiday fun!

Thanksgiving and the December holidays are approaching. Be sure to have extra factor doses on hand, HTC numbers ready just in case, and watch for any sign of a bleed or breakthrough bleed, Staying proactive can keep the family active!

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