DAVIS – Sjögren’s syndrome is a lesser-known autoimmune disease that is often misdiagnosed. It causes symptoms that mirror other ailments.
“It can make you feel like you’re going crazy, right, because everyone is telling you you’re fine,” said Rebecca Lobo.
Lobo has been on a journey for 15 years. It started when she was working on her PhD in nutritional biology at UC Davis and she began experiencing recurrent sore throats, sinus infections, cognitive and physical fatigue, and severe pain.
“Doctors just kept saying your tests are normal, make sure you’re eating well and sleeping properly,” Lobo said. “And I was going, ‘I’m doing all of that, but I’m still struggling.'”
She went through nearly a half dozen doctors. It was debilitating and hard to diagnose. She struggled with her weight and her skin worsened.
“You’re anxious, you’re depressed, and nobody really thinks maybe there is something going on with your nervous system,” Lobo said.
Then she met a woman who helped her find the right doctor.
“[She] took an hour and a half and took my whole medical history and helped me piece together some parts of the puzzle,” Lobo said.
Dr. Nancy Carteron is a rheumatologist and immunologist who has been treating Sjögren’s patients for two decades.
Sjögren’s typically appears in women.
“When the body’s normal mechanisms get miscued and start directing against self-tissue,” Dr. Carteron said.
It can be triggered by a number of things, including genetics, medication, stress, and viral infections. Not everybody has the classic symptoms of dry eyes, dry mouth, and joint pain – but Dr. Carteron says it’s manageable once properly diagnosed.
“It’s very manageable if you get to the right place and you have the right viewpoint that’s looking at all the systems,” Dr. Carteron said.
Lobo initially took medication. Not anymore.
“I have really tuned into my metabolism,” Lobo said. “That was what I did my PhD in, right nutrition and human metabolism … back to that.”
Lobo created a new skincare line made from whole foods, local goats’ milk and honey, to help herself and others.
“Understanding the mechanism and workings of my body and what is going on has helped me manage my Sjögren’s,” Lobo said. “I have a way better life than I have ever had in my whole life.”
Sjögren’s is one of over 100 known auto-immune diseases. Lobo says Sjögren’s advocate was a valuable resource, and through the Sjögren’s Foundation she has found many people and support to help her on her journey of healing.
