Sjogren’s Syndrome: The Most Common Autoimmune Condition You’ve Never Heard Of
As an early Microsoft employee in Seattle, Janet Church “ran hard,” often sleeping on her office futon, fueling on adrenaline and later opting to launch her own business instead of starting a family. That first generation of tech employees, she says, was “creating something exciting and we took the ride.”
So when Church, now a 55-year-old consultant and software company owner in Sonoma, California, started feeling increasingly drained and couldn’t seem to shake recurrent sinus infections, she chalked it up to stress. “I thought: ‘I’m just severely burned out,'” she says.
But even after selling her business in 2001 to rest, Church wasn’t better; she was worse. She continued to battle sinus problems, dry eyes and mouth, debilitating headaches and joint and muscle pain, but received disjointed answers from doctors. It wasn’t until she spent a month in the hospital with meningitis in late 2004 that she was referred to a rheumatologist – essentially the only type of specialist she hadn’t yet seen – who diagnosed her with Sjögren’s syndrome, an autoimmune condition that mostly impairs the tear and salivary glands but can affect many other parts of the body as well.
“The very first feeling you get [after a diagnosis] is relief – ‘Oh great, you know what this is; it can be fixed,'” remembers Church, who had never heard of Sjögren’s before.
But she soon realized it wasn’t – and isn’t – that easy. Sjögren’s syndrome, which seems to be at least part genetic and part environmentally triggered, doesn’t have a cure and, if left untreated, can affect many organs and body systems, including the thyroid, kidneys, liver, lungs, skin and nerves. Some people lose their teeth, develop mouth sores and can’t swallow fully; others may develop lung fibrosis or kidney failure. In about 5 percent of cases, patients develop lymphoma.
“You think, ‘I’m going to do everything I can do to get in remission – and it just doesn’t work like that,” Church says. “[It’s] an emotional roller coaster of how to get yourself back to who you are and to do the things that you love.”
Sjögren’s syndrome, which often accompanies other autoimmune conditions like lupus and rheumatoid arthritis, affects nearly 4 million Americans, most of them women, making it one of most common autoimmune diseases. (Rheumatoid arthritis, by comparison, affects more than 1.3 million Americans, according to the American College of Rheumatology.) But in part because people with Sjögren’s often look healthy and typically experience ubiquitous, nonspecific symptoms like dry eyes, pain and fatigue, it’s often overlooked and misdiagnosed even by rheumatologists, many of whom learned in their training that the disease is no more serious than a “nuisance,” says Dr. Nancy Carteron, a rheumatologist in San Francisco.
“They start complaining of dry eye, dry mouth, joint paint, fatigue – it’s just that when women complain so badly, [they] get labeled with fibromyalgia [or] craziness” until, years later, they develop serious complications, says Dr. Esen Akpek, an ophthalmology professor at the Johns Hopkins University School of Medicine and team member at the Johns Hopkins Jerome L. Greene Sjögren’s Syndrome Center. “At the end, we are able to diagnose, but by then, patients are irreparably damaged.”
Most Sjögren’s patients see four to five different specialists – including dentists, physical therapists and OB-GYNs – annually and take almost nine medications for their condition.
Much of living with Sjögren’s, however, comes down to mindset and lifestyle shifts. “Effective [treatment] does not mean you’re living the life you were without [the disease],” says Church, who still deals with chronic pain, fatigue and brain fog regularly. “That’s the most challenging thing.” Indeed, a survey found that 71 percent of patients say the condition interferes with the things they need to do each day; most also report making changes to their work or careers and home life to better cope. Seventy-four percent also said the condition adds a “significant emotional burden” to their lives.
“It’s harder than a broken bone, harder than a cancer diagnosis because other people – your family, friends and coworkers – understand those illnesses better,” Carteron says. “They don’t understand how someone can feel so awful and still look OK.”
That’s why Church surrounds herself with supportive friends and colleagues, moved to a beautiful part of the country, established a career she can perform remotely and does her best to manage stress to reduce the risk of flare-ups. She also satisfies her leadership drive by volunteering with the Sjögren’s Syndrome Foundation, for which she frequently speaks, and blogs about her condition. “I try to fill myself with deeper connections to people,” she says.
Church also knows how and when to say “no” to save her energy. “Over the years, you learn where your boundary is,” she says. “If you don’t push up to that line, you leave a little bit of your life unlived, but if you push over it too often, you also leave it unlived because you’re in bed.”
Article written by Anna Medaris Miller courtesy of www.usnews.com