Do you believe in coincidence?
The rare disease world abounds with occurrences that prompt deeper reflection
Each day we try to make sense out of seemingly random events. We do this at both an individual and societal level. It’s seen in the creation stories found in all cultures. The Egyptians believed the world was created by the sun god Ra. The Romans believed their society began with Remus and Romulus. For millennia — before Charles Darwin — much of Western civilization accepted as fact the biblical story of the Garden of Eden found in Genesis 2 and 3.
The Britannica Dictionary defines coincidence as a “a situation in which events happen at the same time in a way that is not planned or expected.” Coincidences are sometimes viewed as divine intervention in the world. They become expressions of favor and blessings for a particular group.
U.S. history has its share of this. Some events are portrayed as almost certainly arranged by a divine power. John Adams and Thomas Jefferson were two of the most important individuals in the American Revolution. Both died on July 4, 1826 — the 50th anniversary of the Declaration of Independence. Many saw this as proof the new nation was divinely ordained.
The Civil War is viewed by many historians as the defining event in American history. According to some, it began in the front yard of Wilmer McLean’s farm and ended in his front parlor. Many viewed this as God’s way of giving closure to four horrible years.
Perhaps there’s a divine force behind coincidences. But some might agree with an explanation put forth in an April 2012 BBC article titled “Coincidences: What are the chances of them happening?” The author notes that “the final explanation for coincidences is what is called the law of truly large numbers, which says that anything remotely possible will eventually happen, if we wait long enough. Or to put it another way, even genuinely rare events will occur, given enough possibilities.”
The world of rare
I thought of a particular, personal coincidence on June 20, when the U.S. Food and Drug Administration approved Vyvgart Hytrulo, a subcutaneous version of Vyvgart (efgartigimod alfa-fcab) to treat adults with generalized myasthenia gravis (gMG). Previously, Vyvgart had only been available for intravenous infusion. A Vyvgart treatment cycle consists of four one-hour infusions administered over four weeks. That’s followed by four weeks without infusions before the next cycle begins.
I’ve been receiving Vyvgart since January, and it has been a game changer. Daily life is better and easier. The dread of having a flare-up or myasthenic crisis is almost gone. The packed bag, ready for a trip to the emergency room, is now unnecessary.
But intravenous administration has limitations. Every June, I leave for Maine, where I spend June and July enjoying New England’s incredible summers, and then return to Texas in August. This year, I’m still planning my trip, but I’ll need Vyvgart infusions in Maine, which isn’t simple. Coordinating with a neurologist based there, establishing nursing protocols, and arranging drug delivery require detailed planning.
Vyvgart Hytrulo could eliminate such complicated logistics. According to Allison Foss, executive director of the Myasthenia Gravis Association, “Patients now have the opportunity to receive treatment in an infusion center, at home or at a physician’s office — providing more flexibility and freedom of choice that can make daily living easier for gMG patients and their caregivers.”
Three years ago, I developed MG symptoms and was sent for diagnostic testing. I was told the tests might reveal a few things, including possibly MG. I joked with the doctor that there was no need for further tests — it had to be MG. My father had it, and it seemed logical to me that I did, too.
I was an unusual patient, as I knew much about the disease, whereas most newly diagnosed people know little or nothing about it. Indeed, when Dad was diagnosed, none of our family had heard of it, either.
When I asked doctors about it, they told me MG isn’t an inherited disease, but it did run in families. “Some individuals have mutations in genes involved in nerve-muscle communication, and thus develop symptoms of MG that are not caused by an autoimmune response,” Myasthenia Gravis News reports when discussing causes of the disease. “This genetic condition is sometimes considered a heritable form of MG, called congenital MG.”
I’d wondered how such a rare disease could affect two people so closely connected genetically. A September 2020 Myasthenia Gravis News article titled “Possible Genetic Component to MG Found in Large-scale North American Analysis” notes that a “large-scale analysis of people with myasthenia gravis … in North America revealed a higher prevalence of MG and other autoimmune disorders among their families, suggesting there may be a genetic component to the neuromuscular condition, a study reported.” Perhaps further research will help to clarify all of this.
Newly diagnosed MG patients can experience various forms of anxiety. One of these is caused by concern about life expectancy. This wasn’t the case for me. I knew that after his diagnosis, my dad lived a full and long life. Sure, he had disease-related limitations, but he was able to enjoy life much as he had before MG. The finest man I ever knew died at the young age of 86.
On June 20, he would have been 98. Coincidence?
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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