Spock’s logic doesn’t help patients with symptoms of sarcoidosis

We rare few deserve to matter more to the medical establishment

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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When I woke up this morning, my husband was in the living room watching “Star Trek II: The Wrath of Khan” (1982) for the umpteenth time. It was toward the end when — don’t worry, even though the movie is over 40 years old, I won’t offer any spoilers.

What I will offer, though, is a statement initially made partly by Leonard Nimoy’s Spock, who says, “Logic clearly dictates that the needs of the many outweigh the needs of the few,” to which William Shatner’s Kirk adds, “Or the one.” This idea is repeated, twisted, and reversed in additional “Star Trek” films with the original cast as well as the 2009 reboot film.

It’s an idea that’s all too familiar to the rare disease community.

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When it comes to medical research, the needs of the many (more common disorders) outweigh the needs of the few (rare ones). Over 110 million U.S. adults have high blood pressure, a leading cause of heart disease and stroke. That’s more than 500 times as many people with sarcoidosis, including me. So it’s only logical that more funding goes toward those conditions that occur more frequently.

It’s much the same when it comes to medical expertise. With countless conditions and a finite amount of schooling, more time is spent learning about common diseases, such as cancer and diabetes. A medical student once told me she’d seen only one paragraph about sarcoidosis throughout her medical education. Unless students choose to focus on our disease, that one paragraph is likely all they’ll ever know.

That sets up an unfortunate Catch-22 situation. More than one, actually. (Would that be a Catch-44? Or Catch-66?)

The needs of the many, the few, and the one

Medical students aren’t likely to choose a rare disease as their specialty, be it sarcoidosis or another, if they don’t see more than a few sentences on it to whet their appetites. Worse than that, if they don’t become sarcoidosis specialists, they won’t recognize the symptoms when we patients need to be evaluated. If they don’t recognize it, they can’t diagnose it; if they don’t diagnose it, they can’t refer us to a more knowledgeable sarcoidosis specialist. And those are hard to come by, anyway.

After a yearslong search for answers, we may eventually be diagnosed correctly and referred to a sarcoidosis specialist. But even then, it’s not smooth sailing, as Spock’s maxim can come back to bite us again.

Sarcoidosis can affect any part of the body, but it affects the lungs in 90% of cases. With that in mind, it’s logical that the needs of the many (now pulmonary sarcoidosis patients) outweigh the needs of the few (other types of the disease). As logic dictates, most sarcoidosis specialists are pulmonologists.

Even within this subset, I seem to fall on the side of the few. I do have sarcoidosis in my lungs (though I’ve been told it’s in remission) — in fact, it was the bilateral hilar adenopathy (enlarged lymph nodes in the lungs) reflected on a chest X-ray that helped lead to my diagnosis – but that’s only ever been mild for me. I get short of breath easily and my chest wheezes, especially in cold weather, but my pulmonary function test (PFT) results have always been normal.

That means there’s not much a pulmonologist can do for me beyond an annual exam (PFT and chest X-ray) and a prescription inhaler. It’d be great if that were the end of the story, but it’s not that simple. Sarcoidosis also — and more severely — affects my joints, nervous system, and skin while causing systemic symptoms like debilitating fatigue, fevers, and chills.

That means I have to see a rheumatologist, neurologist, and dermatologist in addition to my primary care doctor and pulmonologist. Medication side effects require an ophthalmologist, and the risk of cardiac sarcoidosis necessitates a cardiologist. Occasional scares over the years have led me to an immunologist, hepatologist, and an infectious disease specialist. As if that weren’t enough, other conditions require an endocrinologist, gastroenterologist, and, of course, a gynecologist. Since my hip replacement, there’s also an orthopedist, physical therapist, and physiatrist.

With all of that taking over my life, it’s no wonder I see a psychologist, too.

It seems pretty clear that my doctors are “the many” in this scenario, and I am the one. But just as Kirk turns the tables in “Star Trek III: The Search for Spock” (1984), I call an exception to the rule here, too. The “highly illogical” lesson that all patients and patient advocates must learn is that, in our own cases, “The needs of the one outweigh the needs of the many.” Our needs matter.

That’s the only way we can (you know I’ve got to say it here) “live long and prosper.”

Note: Sarcoidosis 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.




I concur with many of your statements here. I also see multiple doctors regarding my lung sarcoidosis diagnosis determined through a biopsy of the lungs. I am about 20 years in since my diagnosis and in remission, I guess. The heat affects me mostly with limited activities outside on warm days and of course high elevations are a serious factor in breathing. Thanks for your analysis.

🦋 Kerry Wong avatar

🦋 Kerry Wong

Wow, thank you for sharing your story, James - I'm so glad to hear you're in remission. Not only is it great for you, but it gives the rest of us hope that remission is possible.

JoAnna Riddle avatar

JoAnna Riddle

I truly understand what you are saying. I am struggling with ALL of what you said you are going thru. One of my biggest problems is that as women we are discounted for years before a diagnosis of any sort when men get taken care of almost immediately. I as you had a joint replacement back in June of last year and now I have been in a spiral of inflammation ever since. I have skin in Involvement I would be very interested to hear about yours.

🦋 Kerry Wong avatar

🦋 Kerry Wong

Preach, JoAnna! As women, we are so often dismissed, told it is in our heads, it's not real ... and once they (eventually) concede that something is wrong, there's the long journey of figuring out a rare disease. People of color sadly have to fight to be believed, as well. As if this disease wasn't hard enough on its own. I'm sorry you're in this spiral, and hope it eases up for you soon.

Myrna Carpenter avatar

Myrna Carpenter

This article is right on about my Sarcoidosis life that I have had for about 25 years!! I feel real lucky that I have some very knowledgeable specialists for Sarcoidosis. It is still considered a rare disease with little known medical history as to how a person may get this and no known cure for Sarcoidosis. The amount of research that has been done since I was first diagnosed to today has definitely helped but still needs a lot more research done!! I have learned a lot through your forum and I hope one day there will be a cure for Sarcoidosis! Thank you!!

🦋 Kerry Wong avatar

🦋 Kerry Wong

Having knowledgeable specialists makes a world of difference! I'm glad you have that and can only imagine the progress you've seen (and I hope you have benefited from it). You are right, though, Myrna - we still need a lot more research. And we are in this together!


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