We The People Have The Power. How Are We Going To Use It?

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July is Disability Pride Month and the theme is “The World Works Better With Us”.  

A disability is a physical or mental condition that limits a person’s movements, senses, or activities.  Disability slows us down, holds us back, and stops us.  That’s why it’s called DIS-ability.  Needing accommodations for a disability is as natural as needing glasses to see, but few are willing to inconvenience themselves to accommodate disability, let alone tolerate it.  This is particularly problematic and short-sighted because anyone, at any time, for myriad reasons, many beyond one’s control, can become disabled.  You, too, can become marginalized. 

Airborne illnesses, such as Covid, are ongoing instruments of mass death and disablement. 

Repeated Covid infections drastically hasten joining the disability community.  To avoid infections, avoid gatherings in indoor spaces with no ventilation, or, if you must attend, wear a properly fitted N95 mask and ask ahead of time if the venue can be ventilated properly by opening doors and windows to the outside and running air purifiers.  Vaccines against Covid don’t prevent transmission of the virus; N95 masks, air purifiers, and ventilation do.  

Repeated Covid infections increase your chances of developing long Covid and other post-Covid conditions. 

Epidemiological data from around the world shows that people with post-Covid conditions are at increased risk of developing an autoimmune disease, and 4 times more likely to develop Sjogren’s disease.  

July 23rd is World Sjogren’s Day.  

It's a global awareness day created in 2005 by the Sjögren's Foundation to increase the understanding of Sjögren's disease.  For invisible illness, such as Sjogren's disease, a diagnosis can be the difference between life-supporting care and isolation or dismissal, safety net benefits or denial, belief or gaslighting.  Diagnosis doesn’t change anything, but it changes everything all at once.  However, that’s only true if the information about the disease taught to medical doctors (MDs) and the public reflects the patients’ lived experience.  

We desperately need continuing medical education programs that teach MDs the realities of Sjogren’s disease, instead of perpetuating myths about Sjogren’s. 

And right now that’s not the case.  If it were, there would be no need for www.sjogrensadvocate.com, the online resource Dr. Sarah Schafer established and I edited, wrote, designed, and built with her to provide patients with the tools and strategies they need to advocate for care and support. 

There is no single lab test that is used to diagnose Sjogren’s disease. 

However, even with the tests commonly used to diagnose Sjogren’s (e.g., Schirmer’s test, SSA, SSB), negative results do not rule out Sjogren’s.  What’s the point?  The gold standard for diagnosis is the clinician’s expert opinion, not the classification criteria used for research.  And if the clinicians are taught myths about Sjogren’s and myths about how to diagnose Sjogren’s, they won’t be able to accurately recognize and diagnose Sjogren’s disease.  

The Sjogren’s community is living through an exciting time because we currently have the opportunity to re-examine what we think Sjogren’s is and to develop medical education and therapies to help all Sjogren’s patients, not just the 60-70% with positive SSA and SSB.  There are at least 4 drugs for Sjogren’s disease: Telitacicept, Dazodalibep, Nipocalimab, and Ianalumab, that are now in clinical trials thanks to the hard work of the Sjogren’s Foundation and others who’ve managed to convince pharmaceutical companies that the Sjogren’s community is a large enough market for which to invest in developing drugs.  Some of these drugs are nearing readiness for the marketplace, which is exciting.  Pharmaceutical companies are preparing by investing in raising awareness of Sjogren’s disease among the public and doctors.  Novartis even has paid celebrity figure Carrie Ann Inaba, who lives with Sjogren’s disease, to “Sjout For Sjogren’s”.  While I am excited and grateful to see money and energy being poured into developing drugs for Sjogren’s and raising awareness of Sjogren’s disease, I'm also concerned that these efforts will merely amplify the myths about Sjogren’s disease already entrenched in research and medicine. 

Myths about Sjogren’s already have done grievous harm to millions of people by preventing them from getting timely support and care, causing disability far sooner than is inevitable. 

Amplifying them only will amplify the harm they cause already.  For example, Sjogren’s disease still is called Sjogren’s syndrome on many, major, well-respected medical websites, such as Cleveland Clinic and Harvard Health, despite the Sjogren’s Foundation publishing the official name change to Sjogren’s Disease in Nature Reviews Rheumatology, in June 2025.  And many doctors continue to refer to Sjogren’s as a syndrome, as though there’s not much to a name.  But words matter and they can and do cause harm.  

I was relieved and grateful to see that Mayo Clinic finally gave in to the Sjogren’s Foundation and now refers to Sjogren’s as a disease.  However, having read through their updated webpage on Sjogren’s, the information on the page still misleads the reader and downplays Sjogren’s disease, which still causes grievous harm.  For example, results of the 2025 Sjogren’s Foundation Living with Sjogren’s Survey show that 90% of the 6,360 respondents experience fatigue, 80% of respondents experience a major or moderate impact from fatigue, and 27% of respondents said fatigue had the greatest negative impact on their lives.  One of the key takeaways from the survey was, “Fatigue is especially debilitating, overshadowing other symptoms in how much it disrupts patients’ ability to function, participate in daily activities, and maintain social commitments.”  Fatigue and pain, not dryness, affect the quality of life and function of people living with Sjogren’s disease.   

Yet, Mayo Clinic describes the two main symptoms of Sjogren’s disease as dry eyes and dry mouth and states that some people with Sjogren’s disease have “tiredness”, which is problematic.  Tiredness is a temporary state of low energy that can be alleviated with rest, while fatigue is a lingering tiredness that is constant and limiting.  Fatigue is a persistent state of exhaustion, similar to how you feel when you have the flu or have missed a lot of sleep.  Many people with fatigue struggle to manage their daily affairs.  When fatigue goes unacknowledged and unrecognized by seemingly reputable medical institutions, such as the Mayo Clinic, Cleveland Clinic, and Harvard Health, Sjogren’s patients face the added burden of disbelief and distrust from their loved ones, care givers, and medical doctors.  So, in addition to not getting the care they need and becoming disabled and debilitated, they frequently end up abandoned, isolated, gaslit, and abused.  

Words matter.  When researchers, doctors, and medical institutions are careless with their words, it causes grievous harm, in this case, to millions of people. 

The Sjout For Sjogren’s website, published by Novartis, contains similarly harmful myths about Sjogren’s.  It states, “Up to 40% are affected by Sjogren’s disease throughout their body in ways beyond dryness.”  There’s plenty of scientific data that shows otherwise, as described in “Sjogren’s Is More Than ‘Just Sicca’”, the advocacy handout Dr. Sarah Schafer and I published on Sjogren’s Advocate back in 2022.  But even if you choose to ignore that data, Novartis contradicts themselves by stating that, “Up to 61% of patients with SjD have nonspecific interstitial pneumonia, the most common subtype of ILD”.  ILD stands for interstitial lung disease, a systemic manifestation of Sjogren’s disease, i.e., it’s one of the ways other than causing dryness that Sjogren’s disease affects the body.  The Sjogren’s Foundation states, “Sjögren’s disease is a systemic disease that can damage any part of the body — including the lungs. Sjögren’s disease and other autoimmune diseases like lupus, scleroderma, and rheumatoid arthritis can all cause ILD.”  Systemic features, of which profound fatigue is one, are found in nearly every patient lucky enough to be evaluated fully.  But if doctors are taught that only 40% of patients have systemic manifestations of the disease, they won’t be evaluating each patient fully. 

Science and medicine are hierarchical, patriarchal establishments; racism and misogyny are built into much of the science that informs medical education and healthcare. 

For change to occur, scientists and doctors will have to adopt an attitude of curiosity and humility and risk being ostracized and criticized for going against the establishment.  It requires sacrifice and a willingness to be discomfited.  I hope that people who were historically marginalized and now find themselves in positions of power, such as women scientists, doctors, entrepreneurs, and CEOs, will use their power to enact changes that support marginalized communities like the Sjogren’s community.  We all have the power and responsibility to effect change through the information we share and the people and institutions we support.

The Empower Network 

To that end, as the founder of HIDDEN, the Hidden Illness and Disability Directory of Entrepreneurs and Nurturers, I was excited to join the board of directors of The Empower Network (TEN) at the beginning of this year.  TEN provides chronically ill and disabled entrepreneurs with tools and resources to build profitable, sustainable businesses that honor their fluctuating capacity. 

Please check out, support, and consider joining The Empower Network.

HIDDEN

Our latest addition to HIDDEN is Dr. Abigail Koppes, PhD, founder of Bravais Fine Jewelry. Dr. Koppes redefines fine jewelry through the unique lens of materials science education. Her jewelry is featured in this month’s issue of British Vogue.  Dr. Koppes is an Associate Professor at Northeastern University and leads their Advanced Biosystems for NeuroEngineering Laboratory.  In 2024, Dr Koppes received a Pilot Research Grant from the Sjögren’s Foundation that she and her team are using to develop innovative materials and techniques to support nerve regeneration, better understand how Sjögren’s affects the nervous system, and find better ways to understand nerve health and healing.  “My main goal is to say if we can figure out the causes, maybe we can get in there and block it from happening earlier.”  Dr. Koppes lives with Sjogren’s disease, mast cell activation syndrome (MCAS), dysautonomia, occipital and trigeminal neuralgia, chronic migraines, and post-viral autoimmune small fiber polyneuropathy, all of which stem from long Covid.

The 5th Annual Virtual Sjogren's Summit

And Dr. Kara Wada, MD, an immunologist living with Sjogren’s disease, the founder of the Immune Confident Institute, and a member of HIDDEN, is hosting her 5th Annual Virtual Sjogren’s Summit on July 16-18.  It’s online and free to attend live.  Over 34 specialists, including HIDDEN members Cristina Montoya, RD and Kristina Kelly, BCPA, cover what’s new in treatment and how to support your body daily.  

If you or someone you care about lives with Sjogren’s, register for free here.
(I’m a Sjogren's Summit affiliate and may earn a commission if you register through my link.)

Sjogren's Foundation, Walk For Sjogren's

Finally, please join and/or donate to my Walk For Sjogren’s fundraiser in support of the Sjogren’s Foundation.  Donations are tax-deductible and all money goes to the Sjogren’s Foundation.

Thank you for celebrating and supporting the disability community. 

A version of this blog post is published in my local newspaper, The Davis Enterprise.

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