SAN MARCOS, Texas – A San Marcos mother and father want the public to learn about Sjögren’s disease — a chronic autoimmune disorder that affects the glands that produce tears and saliva — after their 14-year-old daughter was diagnosed with the condition this summer.
For months, Olivia Torres and Donnie Rodriguez lived a nightmare, wondering why their daughter, Gia Rodriguez, kept getting sick.
All of her ailments had remained a mystery until this past summer, when she suddenly began slurring her speech.
“Every time I talk about this, I get emotional,” Rodriguez said.
Rodriguez said that for months, Gia experienced mouth sores and headaches with seemingly no known cause. That changed once Gia’s headaches became worse and she was having difficulty speaking.
Rodriguez said his wife took their daughter to the hospital.
“She calls me at work ... and says ... ’Gia has a tumor,’” Rodriguez said.
However, that diagnosis turned out to be incorrect.
For more than a week, doctors ran a battery of tests on Gia and put her on antibiotics. Rodriguez said that after about 10 days, they identified the cause: Sjögren’s disease.
When Sjögren’s is left untreated, it can cause serious complications of the organs or neurological issues, which is what Gia had been experiencing.
“It was the Sjögren’s that caused her CNS vasculitis in her brain, and that caused her brain to swell, and it cut off her blood flow to that artery,” Rodriguez said.
Sjögren’s affects up to 4 million Americans. However, it’s tricky to diagnose, especially in children.
“Kids make more tears, and they make more saliva. We know that they make more tears and more saliva than adults,” said Dr. Sara Stern, pediatric rheumatologist at the University of Utah. “So, we don’t have any norms — normative data, in the childhood form, to say that they are truly dry. And in order to get to the adult classification criteria of ‘severe dryness,’ they have to be very, very dry.”
Currently, there is no cure or FDA-approved treatment for Sjögren’s disease.
To manage her symptoms, Gia is following a healthy diet, medical treatment and taking a cocktail of drugs.
“You don’t ever want to see your kids go through anything,” Rodriguez said.
Both Rodriguez and Torres want to raise awareness of Sjögren’s disease, keeping it on the public’s radar and enabling people to seek help if they experience any of the associated symptoms.
“Ask questions. Don’t be afraid to speak up for yourself,” Torres said.
More information about Sjögren’s disease and resources for patients can be found on The Sjogren’s Foundation website. The nonprofit is dedicated to increasing research, awareness and education on the disease.
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