Chasing Lightning

By Joe Kurmaskie — Like many good mysteries, this one began with a photograph. Lightning In A Saddle: the long, untamed life of Evelyn Hamilton, came out in book form in 2019 and has been optioned by a Hollywood production team from a screenplay I completed last summer.

The photo that started it all caught my eye while doing research for another project. Clicking down to find what I needed landed me on a PhD student’s thesis project page; turn of the century suffragettes. In the corner, waiting patiently, was an image of a woman leaning against a bicycle.

Something wasn’t right. Instead of a long dress and parasol, this cyclist, circa 1920, was wearing a sponsored wool jersey, bike shorts and a look that said, you might think you can handle some of this, but I do real damage on a bicycle in any setting and in the lives of those around me. She looked like a contemporary, a time traveler trapped in buttoned down pre war Britain.

I lingered over the image, finally grabbing it into a file, before moving on. I made a promise to myself I would learn the rest of her story when time and energy allowed.

Little did I know that I was only a few curves away from my own life nearly unwinding for good. Time was running out for me, and energy in short supply.

Before I could tackle the long, untamed and utterly astounding, true story of Evelyn Hamilton; British female cycling phenom who lived, loved and rode on her own terms, fought sexism, actual Nazis and her own ambitions to become a beacon of humanity, I would have to discover what was killing me before it finished me off.

The only problem, I didn’t know I was dying, I thought this was how everyone felt knocking on the door of middle age.

The medical world calls it Hereditary Hemochromatosis/Iron Overload. It’s known in some circles as the Irish Curse, but this deadly genetic mutation which causes one’s body to retain iron in organs and tissues is a worldwide curse, on par with type 2 diabetes in terms of its reach. And it’s really a Viking victory of sorts.

The world’s most common deadly treatable genetic disorder, hereditary hemochromatosis, is also the least detected, diagnosed and treated in time to prevent chronic illnesses and premature dead. Not through lack of knowledge, but willful negligence on the part of a profit driven medical system.

But my big mouth and regular check ups kept me in the race. That and exercise, drinking tea with my meals (tea blocks the absorption of 70 percent of iron), not drinking alcohol, eating badly, or smoking … but even while playing all the right health cards, this disorder would have beat me in the end.

Once we knew what was causing my headaches, fatigue — a ferritin level of 2600 (normal being 50) and a liver so packed with iron I was a year or two away from needing to shop for a new one or for a cemetery plot — we could treat it.

Each week for a year, they removed a pint of blood from me to force the stored iron in my tissues to be pulled out for use oxygenating the new blood my body was being forced to make. This slow and steady leeching process detoxifies my organs and brings everything back to normal levels.

Now, 36 months later, I only get blood draws every 90 days.

Caught in time, one gets to be symptom free and live a full life. Caught later, the blood letting still helps lessen symptoms and prevents further deterioration of organs. Left untreated it leads to liver failure, cirrhosis, heart attack, heart failure, diabetes, arthritis and eight cancers — including pancreatic, stomach, gall bladder and liver cancer.

Bloodletting to save me … so Game Of Thrones of them.

Of course I love a good fight almost as much as I love a good story and the tale of hereditary hemochromatosis turns out to be an epic tale!

Iron in the body is the food that bacteria feeds on to get strong and overwhelm its defense systems. That’s why we have chelators around all the openings in our body – binding with much of the iron so bacteria can’t feed and grow. It’s a balancing act. But my mutation locks down iron on a permanent basis allowing it to store over time, stiffen organs and, Goodnight Detroit.

But why would evolution choose something that will time bomb in 40 years? Because it would save them in the here and now so they could procreate. Here’s where it gets awesome. If you have the mutation it stores iron but it’s stingy about storing it in one special place – inside the police force type white blood cells.

This cell surrounds infection, preventing it from spreading. In people with normal versions of this cell, the bacteria and infection can smuggle in as a trojan horse, growing strong on the police cell’s iron, and breaking free to cause chaos as the cells give it a ride around the body. But my police cells carry no iron.

Neither did the Vikings cells — where it started.

They got about forty infection and illness free years — time enough to mate, etc. and all the cultural ideals of battling and bloodletting in their daily lives — kept the disorder in check, for many, well beyond 40.

When the black death/plague came to Europe, the Viking’s founder colonies had spread the gene and protected a portion of the population … which spread it further and allowed much of Europe to survive many other illnesses before antibiotics etc.

So my Viking blood has been very good to me, I was the guy who never got sick or only mildly and got over it before others … until now.

Thor’s hammer had grown heavy and deadly inside me, poisoning me with each bite of food, and it had be pulled out, one pint at a time.

Hereditary Hemochromatosis and Athletes

1 in 9 are affected worldwide either as carriers or two gene holders. Having the mutations increases one’s risk of storing excess iron in tissues and organs. Iron overload is the trigger for a dozen cancers, chronic and deadly illnesses including heart attacks, liver disease, liver and heart failure, arthritis, diabetes. It has one of the lowest diagnosis rates in the world with less than 8 percent discovering they have it in time to treat properly, or at all.

But are athletes at greater risk of iron overload than the general population? A number of studies have concluded yes, they are. But why?

1. Iron Supplements: Although numerous science based studies have determined it generally does not improve performance, iron is often used by elite athletes. This trend has been on the rise for decades, promoted by the vitamin industry. Publicity about it’s use has influenced mid-range athletes and the larger population of citizen athletes training for charity runs, spartan races, marathons, teams of all sports and cycling clubs.The physiologic changes induced by exercise can mimic iron deficiency and decrease hemoglobin and ferritin concentrations over the short term. Determination of serum transferrin concentrations identify true iron deficiency, but too many athletes simply take iron pills or multivitamins with large doses of iron without being tested for real deficiency, overload or genetic mutations… because they heard it was good for them and might give them an edge.Since HH has one of the lowest diagnosis rates in the world, with less that 8 percent discovering they have it in time to treat, or at all, a large segment of athletes are playing Russian roulette every time they take iron pills.In contrast, increased iron stores in the body are a frequent finding in elite athletes who have used long-term iron supplementation. For example, elite runners have increased intestinal blood loss, but can be compensated by enhanced absorption of dietary iron i.e eating a healthy diet of food. Taking iron pills and supplements only increases the risk of iron overload (especially in athletes with undiagnosed hereditary hemochromatosis) without improving performance.
2. More than a casual relationship between elite athletes and a higher prevalence of hereditary hemochromatosis than general population has been established.No less than four independent scientific studies in Britain, France, Spain and Australia have reached similar conclusions – athletes test for HH at higher rates than general population, not due to supplements, but at the genetic level. The Madrid study findings indicate a high prevalence of HFE (High Iron Fe gene) gene mutations in highly trained professional athletes populations (49.2%) compared with sedentary controls (33.5%). In a study of French athletes across several sports the primary conclusions were that while 27% of the French population is heterozygous (carriers) for mutations in this gene, 80% of the French athletes who won international competitions in rowing, Nordic skiing, running and judo displayed mutations in one or more allele of HFE, thus demonstrating the existence of a favorable phenotype linked to this heterozygosity. Additional conclusions from these studies included:A. The frequency of HFE mutations in elite athletes is up to twice as high as in controls. (across all the studies.
   B. In the international podium group from the French study, 80% of athletes had mutations in the HFE gene.
   C. The HFE mutations are favorable to high level performance in athletes.
   D. Heterozygous HFE mutations could be associated with a favorable phenotype.
3. Athletes get tested more frequently and thoroughly for their physical condition than do the general population.A strong argument, backed by data from three medical system surveys, indicates one reason more athletes know they have HH than do in the general population – and get treatment – is because they schedule more physicals, or are mandated to take them by sponsoring organizations, request more tests be run and are viewed by health professionals as stronger candidates for specific panels and tests outside of routine blood work. Because they present less factors such as drinking, smoking, poor diet, lack of activity, doctors look beyond presenting symptoms for a source.

The Take Away:

1. While more studies need to be done regarding the correlation between elite performance and prevalence of gene mutations, athletes of all stripes should NOT take iron supplements and vitamins with iron in them
2. Highlights the need for widespread, routine iron panel testing for all populations to catch this disorder and its damaging effects early and often. Sign our petition to make those tests routine again.

As I got treatment and recovered my strength and stamina I returned to that image of a female cyclist looking like a time traveler from 2005 tapped in 1920.

Research was slow going. I used this one image to search for others, finally employing a face recognition app. That’s when I turned up a name. Evelyn Hamilton. No wikipedia page. A further search of Hamilton and cyclist hit pay dirt. Evelyn started out as Evelene Alice Bayliss. And over the course of her life had variations to her name. She was Evelene, Evelyn, Gladys, Alice, and several last names Helsen, Bayliss, Hamilton. As research continued I began unearthing articles and newsreels and connections which would take me on a literary global treasure hunt… revealing the biggest, most consequential story of my writing career. I would have the good fortune to bring a war heroine, cycling champion and equality pioneer back to life and across the finish line of history. From one picture to a life now featured at www.evelynhamiton.org to a nomination for induction into the British Cycling Hall of Fame in 2020.

More of Evelyn Hamilton’s exploits – Rides across three zipcodes at 12 years old. Told that society has rules and boundaries because it’s a dangerous world out there. Her response, “And I plan to pedal every mile of it.”