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The Impact of Conspiracy Theories on Rare Disease and Diagnoses

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Grant Wahl was covering the World Cup in Qatar on December 9th when he experienced an aortic aneurysm. As a result he passed away at the age of 49. His family had some initial questions surrounding his death, as any grieving family would. Rumors and right wing conspiracies regarding his untimely death flooded the internet, flourishing in the absence of further information. These baseless theories first included assumptions of nefarious conduct by a foreign party, only to later morph into COVID vaccine conspiracies as the cause of his death.

The first conspiracy angle appears to be the result of reports that Wahl was detained for about 25 minutes the week prior to his untimely death by World Cup guards for wearing a rainbow shirt with a soccer ball. Wahl was an avid supporter of social justice issues and the LGBTQ+ community. Once the autopsy results confirmed a natural cause of death, his family’s questions appeared to be mostly answered, while the public’s conspiracy narrative took the anti-vax turn. There are no connections between COVID, the COVID vaccine, and aortic aneurysms. There is, however, a connection between aortic aneurysms and connective tissue disorders.

For those who aren’t familiar with connective tissue disorders like Marfan syndrome or Ehlers-Danlos syndrome, it is suggested that those with these disorders be screened for aortic aneurysm as the risk for such a medical event increases by 20% in comparison to the average population. Unfortunately, so many with these types of disorders are often left undiagnosed until a major medical event happens, as they are typically multisystemic resulting in many elusive symptoms that don’t point to an obvious diagnosis.

The Marfan Foundation released a statement on December 14th offering their condolences to the Wahl family and further highlighting the importance of awareness and early diagnoses and detection for connective tissue disorders and related conditions, including aortic aneurysms. Wahl’s brother Eric tweeted out on December 16th “Tall, lanky guys with long arm spans, narrow fingers, and/or if you have/had pectus excavatum: please get a heart-specific health check up… Get checked for Marfan syndrome as well. I’ll be doing this when I get home.” Having this knowledge is important for their family to know exactly why they’ve lost a loved one, and what inheritable conditions other family members may need to be screened for moving forward.

So why do the remaining conspiracy theorists still blame the vaccine? One reason may be that Wahl’s wife, Dr. Celine Gounder, happens to be a physician and medical journalist who specializes in infectious diseases and global health. The comment sections have been weaponized against her, their family and also indicate a tone of assumption going so far that any medical event is an opportunity to politicize the vaccine as a cause. Dr. Gounder has done what she could to be transparent with the public during a time when her family should have been offered the grace to grieve and find out the necessary health and medical information they needed for their family. The creation of unfounded conspiracies in the absence, or delay, of information are counterproductive to the health of our society, and any patient who may be dealing with a complicated medical event or rare diagnosis.

It is my hope in writing this article to extend the condolences and grace to the Wahl family that were overshadowed by the ridiculousness that transpired. I don’t generally care for the word hypochondriac, as I recognize so many have struggled to receive proper diagnoses and have been falsely given the label. But I think of the term vaccine conspiracy hypochondriacs to describe those who believe all and any potential medical events are somehow the result of the covid vaccine. It is not healthy human behavior to continue with such unfounded anxieties, trying to create negative connections to a COVID vaccine that just aren’t supported.

Rare diseases and diagnoses need societal clarity to be properly acknowledged and achieve advancements. That won’t be achieved if we’re too busy scapegoating these already misunderstood ailments on a completely unrelated vaccine.

Image via MSNBC YouTube

Originally published: January 30, 2023
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