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Taking On Sjögren’s

Doctors in the clinic.
An innovative approach to treating a complicated and elusive disease

Article written by Zac Unger

Frances Van Loo wasn’t feeling well. An academic who earned a PhD in economics and a faculty position at UC Berkeley’s Haas School of Business in the 1970s — when women were a rarity in the field — Van Loo wasn’t accustomed to feeling lethargic. Her primary care physician noticed her continuously low platelet count and sent her to a hematologist. “He told me that I had bone marrow cancer,” she recalls, “but that I didn’t need to worry about it because it was moving very slowly.” Needless to say, that wasn’t much of a reassurance. Then he left to do research and tossed her to another doctor. The second hematologist rejected the cancer diagnosis but he also sent her to a liver specialist and to a neurologist. The neurologist treated her with monthly 3-hour infusions for over a year, which did no good whatsoever. By this point, Van Loo’s symptoms also included severely dry eyes and dental problems associated with an inability to produce adequate saliva.

“I was having symptoms for five years, and probably more like eight to ten,” she recalls. Eventually Van Loo landed in the office of Dr. Nancy McNamara, a Professor and Associate Dean for Academic Affairs at the Herbert Wertheim School of Optometry & Vision Science at UC Berkeley. McNamara, a specialist in dry eye, confirmed what so many other doctors had missed. Van Loo wasn’t suffering from cancer or liver failure or any of the other theories that had been proposed. Instead, what Van Loo had was Sjögren’s Syndrome, an autoimmune disorder that often first manifests with dry eyes, but that can grow to include any number of additional symptoms and bodily systems.

McNamara, Chief of the Sjögren’s Clinic, says that Van Loo’s experience is not unusual. “Quite honestly, the typical patient is a middle-aged woman,” McNamara says. “And they come to a doctor and say ‘I’m feeling tired, I’m kind of achy, my eyes are dry, and my mouth is dry.’ And oftentimes they just get told ‘Oh you’re just getting older and things tend to dry out so you’re just going to feel more fatigued.’ And then they get a pat on the head and sent off and nobody really takes the time to figure it out.”

Despite the all too common brush-off, Sjögren’s is very real. In fact, it affects more than four million people in the United States, approximately ninety percent of whom are women. Probably the most famous sufferer is tennis star Venus Williams. Williams withdrew from the 2011 US Open because of extreme fatigue. At one point she was the top-ranked player in the world but undiagnosed Sjögren’s caused her to fall so far that she was no longer even in the top one hundred players. Even with access to the world’s best doctors, it took seven years of struggle before Williams was accurately diagnosed. This isn’t unusual, says Dr. McNamara. “Historically, it takes five to seven years for Sjögren’s to get diagnosed, because clinicians often don’t know how to recognize it.”

Sjögren’s is an autoimmune disorder which, among other things, wreaks havoc on the body’s ability to generate moisture. This is why many patients’ first experience of the disease is keratoconjunctivitis sicca, or dry eyes. People often fight the disease unsuccessfully by themselves for years, changing contact lens solutions or using over-the-counter eye drops. Xerostomia, or dry mouth, is another common early symptom. Simply drinking water throughout the day isn’t effective and the lack of constant salivary flushing provides an ideal environment for cavity-causing bacteria and the periodontal disease, cavities, and soft tissue infections that follow.

While dry eyes and dry mouth are often the first symptoms, the disease can take many forms. “Basically as we currently understand Sjögren’s, it’s an autoimmune process,” says Dr. Nancy Carteron, a rheumatologist who works at the Sjögren’s Clinic. “The body isn’t supposed to react to its own cells, but something happens here and it does.” The hallmark of Sjögren’s is a faulty lymphocyte, an immune cell that circulates in the blood after having been created in the bone marrow. These lymphocytes primarily impact glands, which are found throughout the body and in most major organ systems. Sjögren’s sufferers can experience joint pain, as with rheumatoid arthritis. Up to sixty percent of patients have some sort of lung involvement and some even have inflammation of the heart muscle, leading to pulmonary hypertension. Even the nervous system can be a key component, causing peripheral neuropathy or numbness of the face. The list of potential symptoms goes on and on, affecting fertility, digestion and, says Carteron, “women who have one of the antibodies seen in Sjögren’s can actually have those pass the placenta and, in a small number of patients, these can go to the baby’s heart and cause myocarditis or congenital heart block.”

“Despite the all too common brush-off, Sjögren’s is very real. It affects more than four million people in the United States.”

Fortunately, patients suffering from the constellation of symptoms that make up Sjögren’s Syndrome have an ally in Dr. McNamara and the Sjögren’s Clinic. In operation since 2019, the clinic takes an innovative approach to treating a complicated and elusive disease. Having established a dry eye clinic at Berkeley’s Herbert Wertheim School of Optometry and Vision Science, McNamara found herself with an ever-expanding roster of people with Sjögren’s. “And at that point, I thought, ‘Wow we have all these patients with Sjögren’s and we’re doing this piecemeal.’ I would send them to UCSF to see Ava Wu (a dentist) and then they’d need a rheumatologist so I’d send them over to Nancy Carteron. But it was three different clinics, three different clinicians, and the patients had to wait for an appointment at all three. And then the communication…” McNamara continues, sounding frustrated at even the memory of how difficult it was to interact with off-site doctors. “We’d send letters to each other, but it just doesn’t work very well for these patients who have what is really a very debilitating disease. It’s disabling in many ways because they can’t work, or they can’t read, or they have trouble going outside for a walk because of the wind.”

For patients experiencing so much difficulty simply accomplishing the tasks of daily life, it was nearly impossible to make their way to three different offices, navigate three different medical bureaucracies, and then try to get three different doctors to communicate with one another on a common course of treatment. “Sometimes we can solve the problem in a single visit,” says McNamara, “or at least get the patient the information they need in one visit versus having them travel all over to different providers to figure it out.”

The Sjögren’s Clinic condenses all of that chaotic running around into a single, smooth experience. Dr. McNamara joined forces with Dr. Nancy Carteron (the rheumatologist) and Dr. Ava Wu (the dentist), and patients are now able to see all three doctors at the same place and on the same day. “We have different exam rooms, because we all have different procedures and examinations and equipment,” Dr. McNamara says, describing the idea behind the comprehensive clinic. “And then the patients can rotate from room to room. But we’re all in the same clinic, on the same hallway, with rooms right next to each other.” Patients will typically come for the better part of a day, spending thirty minutes or an hour with each of the doctors in turn. “I’ll be in the waiting room,” says Frances Van Loo, who has been a patient at the clinic since graduate school, “and I’ll hear people talking about driving home to Fresno or places even farther away than that.” The one-stop shopping of the Sjögren’s Clinic undoubtedly makes it possible to provide treatment to people who might not otherwise be able to manage multiple trips.

The value of the all-in-one clinic goes far beyond just convenience for patients. After the patient exams are done, the three doctors sit down together for a “multidisciplinary conference” and discuss their patients one by one. “We present the findings of the day,” says McNamara. “We’re getting the whole systemic health history from the rheumatology visit, we’re getting all the history and findings from the oral medicine specialist, and all the results of the eye exam. And we can bring that all together and come up with integrated recommendations for the patient.” Dr. Carteron, the rheumatologist, recalls the days when she’d have to go back and forth with other doctors, often missing the chance to have an in-depth conversation. But at the Sjögren’s Clinic, she says, “I’m able to have discussions in real time, rather than just relying on a note. And the immediate access to experts in eye and dental care helps me make a diagnosis, sometimes to exclude Sjögren’s as a possibility.”

Tennis player Venus Williams

And, crucially, combining the visits allows the doctors to begin to treat the disease immediately and in a coordinated fashion. “There are a lot of rheumatologists who don’t know that you can have significant corneal damage from Sjögren’s even without having the patient complain about dry eyes,” says Carteron. “So unless they’re seeing the right eye doctor who does the right testing and the full staining, that person could end up with damage before the appropriate diagnosis gets made.” Designing a system to prevent future problems for patients saves money, saves healthcare resources, and alleviates needless suffering.

Unfortunately, there isn’t a single, definitive treatment for Sjögren’s, no pill or infusion that can eliminate the root causes. So a lot of the effort of doctors working on Sjögren’s is aimed at managing symptoms and ameliorating the worst effects of the syndrome. “We have a treatment toolkit,” says McNamara, which includes scleral contact lenses and autologous serum, for which “we draw blood from the patient, spin out the serum and formulate it as an eye drop that works much more like natural tears than an artificial tear you would buy at Walgreens.”

But, Dr. McNamara says, “we don’t have a total cure for dry eye. We want to care for these patients but we also want to come up with novel therapies and innovative approaches to treat their disease.” McNamara’s lab has a new therapeutic that is currently in Phase Three clinical trials. “This type of situation is a great way to marry the clinic to the research,” she says, “and we’re very well positioned for research studies and clinical trials.”

Some of the greatest strengths of the clinic aren’t even strictly medical. Instead, having an entire team dedicated to this often-dismissed disease allows patients to feel as though they’re being taken seriously, to have in-depth discussions with specialists who validate and understand how disruptive Sjögren’s can be to a patient’s entire life. “I’ve had to educate my best friends about what this is,” says Van Loo. “And sometimes you get someone who is a nurse
or even a doctor and they’ve never heard of this or, if they have, they wave it away as a non-disease.” Van Loo appreciates being part of the interaction between the doctors at the Sjögren’s Clinic. “One of them will pick up on something that the others may not have noticed and then they deal with it as a group. And the openness of all of them is just amazing. They’ll admit when they don’t have the answer to a question and then they’re so good about emailing or calling back once they figure it out.”

“I get excited talking to optometry students about this,” says Dr. Carteron, “because they may meet someone in their career and be able to ask some questions and then they say ‘Oh I wonder if…’ and they’ll be able to make the
next referral step.” Dr. McNamara agrees wholeheartedly. “I would love to see more clinics get started to do this kind of care. And not even just for Sjögren’s. There are so many diseases where this type of model and integration would be so valuable to patients.”

Because at the end of the day, the best doctors recognize that their work isn’t narrowly about a disease or a drug or a procedure. The underlying reason for it all is the patient who shows up seeking help. “A patient is not just their eye,” says McNamara. “They’re not just their mouth, not just their systemic condition. What we do here is care for the whole person.”

About the images

Top: Nancy Carteron, MD, Nancy McNamara, OD, PhD, and Ava Wu, DDS at the Sjögren’s Clinic on the UC Berkeley campus (Photo by Elena Zhukova). Bottom: Tennis champion Venus Williams is one of the most well-known sufferers of Sjögren’s Syndrome (Photo: AP).
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