The odd sensations in her hands began nine years ago, when Heather Segal was pregnant with her first child.
“Then I had my daughter and six months later I went to the doctor because my legs and feet were tingling all the time,” says Segal, 41, of Castle Pines North, Colorado.
Segal’s symptoms eased until her second child came along two years later. She says, “I don’t really remember the first two years of my son’s life; I was in survival mode. People said, ‘You’re just post-partum’ but I knew it was more than that.”
Segal had constant yeast and sinus infections, memory deficits and depression, along with “this all-encompassing exhaustion—it was hard to lift a glass,” she recalls.
Eventually, Segal would be diagnosed with Sjögren’s syndrome, in which the immune system attacks the body’s moisture-secreting glands. Segal says nobody understood what she was going through, not even her husband. “It wasn’t until Venus Williams revealed she had Sjögren’s that my husband said, ‘Wow, you really have this.’”
As with Segal, lack of energy was a major symptom for the tennis star, who announced her Sjögren’s diagnosis after withdrawing from the US Open one year. “The fatigue is hard to explain unless you have it,” Williams told the New York Times.
Williams’ revelation shone a spotlight on Sjögren’s, a disorder often misunderstood even by physicians. “We gained about 100 new members,” says Lynn Petruzzi, RN, MSN, board chairperson for the Sjögren’s Syndrome Foundation. “They would say, ‘My doctor only told me I have dry eyes and mouth.’”
In Sjögren’s, immune cells infiltrate into the salivary and lacrimal (tear) glands, leading to tissue destruction. Other organs can be affected, including the digestive system, joints, kidneys, liver, lungs, nervous system and pancreas. Sjögren’s also increases lymphoma risk. According to the SSF, as many as 4 million Americans, the vast majority women, have Sjögren’s.
While it can occur by itself, Sjögren’s often arises in conjunction with other autoimmune diseases, such as lupus or rheumatoid arthritis. Researchers suspect that viral infection or stress stimulates the runaway immune response seen in Sjögren’s. A genetic link is suspected, but Petruzzi says the specific genes have not yet been discovered.
Sjögren’s can be difficult to pin down; Segal says it took her six years to get a definitive diagnosis. Symptoms are intermittent and their varied nature leads people to see different practitioners. “There isn’t one person looking at the whole picture,” says Petruzzi, herself a Sjögren’s patient.
But practitioner awareness is growing, which may help explain why Sjögren’s is being found in younger people. “It is most frequently diagnosed when people are in their 40s and 50s; now people are being diagnosed in their 30s and even their 20s,” says Petruzzi.
There’s more to the dryness seen in Sjögren’s than just the discomfort it causes. Dry mouth can increase the risk of dental infection, while dry eyes can lead to blepharitis, a chronic inflammation of the eyelids.
Frequent toothbrushing is crucial. Using a toothpaste that includes xylitol, a natural sweetening agent that interferes with dental plaque development, can help, as can bacteria-fighting tea tree oil. Eye ointments (generally used overnight) and drops help ease dry eyes, as does wearing sunglasses when outdoors; patients may also have plugs inserted into their tear ducts. Some people take omega-3 fatty acids, found in fish, krill and other sources, to help alleviate dryness. (The healthy fat gamma-linolenic acid is recommended by holistic practitioners for skin problems linked to Sjögren’s.)
Omega-3s also help reduce inflammation. “You have to think of lowering inflammation and preventing lymphoma,” says Nicole Egenberger, ND, director of Remède Naturopathics in New York City.
Besides avoiding such inflammatory foods as sugar, alcohol, caffeine and red meat, Egenberger recommends supplements such as green tea extract, which contains a substance called EGCG, along with resveratrol, quercetin and curcumin (compounded with black pepper or as a phytosome). “All of these have been shown to modulate gene expression, so they can modulate how inflammation occurs in the body,” she says. Egenberger and Petruzzi both stress the importance of identifying any food allergies that may exist, such as sensitivity to a protein called gluten found in wheat and other grains.
Food allergy isn’t the only digestive issue associated with Sjögren’s. “Any gland in the body is producing less fluid, including those in the digestive tract,” explains Egenberger. The amino acid L-glutamine “is a primary fuel for enterocytes, the cells that line the GI tract. It feeds them and helps them repair themselves. Probiotics not only help maintain the ecology of the digestive tract, but also help modulate the immune system, the disease itself.”
Egenberger says dealing with factors that underlie Sjögren’s can do more than ease symptoms. If such issues are addressed, “the amount of damage will be reduced. It’s important to realize you can affect the level of antibodies circulating in the blood,” she says.
Segal, a full-time mom and SSF volunteer, has found healthy eating to help her deal with Sjögren’s. “I’m gluten-free and eat very little sugar.” Segal has also adapted her activity levels to account for her fatigue. “I used to be really active, hiking and doing anything outside. I was struggling with not being able to do that.” Segal built herself back up to walking for 45 to 60 minutes at a time, along with doing yoga and Pilates. “I also go for acupuncture every two weeks and take herbs from my acupuncturist.”
“It’s a disease no one can see. People say, ‘You look fine,’” Segal says. “It’s important to gather a group of friends and family around you who understand about Sjögren’s.”