Back when Gleicy was living in Brazil, she started experiencing extremely painful swelling on the side of her face and under her ear. Her local hospital told her she had mumps and prescribed antibiotics.
But over and over again, the same thing would happen. Gleicy's face would "sort of" go back to normal for a few months before her symptoms would return. "The pain was so strong that it could get to a 9.9 out of 10," she remembers. "I would go a week without being able to eat or even drink water properly, just through a straw. And my eyes were so dry they felt like sandpaper."
Gleicy wondered if she in fact didn't have mumps. "I started to be suspicious about the diagnosis, because I knew that mumps would happen only once in a lifetime and I had three to four occurrences every year," she explains.
The right specialist—and interpreter services—changed everything
In 2022, Gleicy moved to the U.S., where the cycle of swelling, pain, hospitalization, and antibiotics continued. Eventually, her family doctor noticed the pattern and referred her to a rheumatologist. Although the rheumatologist was able to run some helpful tests and make an initial assessment, she didn't have access to a Portuguese interpreter and required Gleicy to bring someone to her appointments who could translate.
Recognizing this was not a sustainable situation, the family doctor referred Gleicy to rheumatologist Dr. Berk Degirmenci at Boston Medical Center, where she would be able to access all the services she needed. "When I arrived at BMC, my English was quite poor, but I was able to communicate a little bit with the man at the front desk," remembers Gleicy. "He was super nice to me and helped me to my appointment and got me an interpreter. It was the best thing that ever could have happened to me."
Following careful examination including office ultrasound evaluation of the glands in her head and neck, Gleicy was informed that she has Sjogren's Disease, a chronic autoimmune disease that causes dry eyes and dry mouth, among other symptoms. She had never heard of Sjogren's disease before but was informed that it is more common in women, with an average age of 40 at diagnosis. "I had so many questions!" says Gleicy. "Dr. Degirmenci was super patient. He explained that my salivary glands were getting swollen on my face because of Sjogren's disease. He was so thorough and explained every detail to me. It was such a relief because I had had suffered for years not knowing where the issue really was."
Living with Sjogren's disease and helping others
Although there is no cure for Sjogren's disease, there are many simple treatments that help. Since starting on prescription eye drops and a mouthwash six months ago, Gleicy has had no symptoms. "I used to always be at the hospital, but today I'm able to take better care of my four kids," she says. "My quality of life has improved from zero to 100."
Now that Gleicy is able to show up for herself and her family differently, she has become passionate about sharing her experience in hopes of inspiring others to get help. "We tend to think that these syndromes will go on forever, but you can get so much better just by taking a simple medication," she says. "I advise people to seek out a specialist and get treated. I really want to help those who don't yet know about this disease, just as I didn't. I'm very happy to be able to share my entire journey."