A Profile of Paediatric Sjögren's
Candi & Jazlyn's Story
Can you imagine finding out that your 9-year daughter has been diagnosed with Sjögren’s, a disease you have never heard of? That’s what happened to Candi Wilson in 2015. Her daughter, Jazlyn, had been experiencing frequent recurrent parotitis, a very painful swelling of the parotid salivary glands, as well as fatigue. She was referred to a pediatric ENT who did a lip biopsy and made the diagnosis. Candi was relieved to have an official diagnosis but it was soon followed by tremendous fear and guilt. Candi, who suffers from psoriatic arthritis, knew that autoimmune diseases can run in families. She felt a roller coaster of emotions which she still experiences at times.
According to the Sjögren’s Foundation, parotitis, fatigue, and joint/muscle pain are the most common presenting symptoms of pediatric Sjögren’s. About 60% of children with Sjögren’s had a history of parotitis as opposed to 24% of adults. On the other hand, children can also experience the same symptoms as adults such as dry eye disease, dry mouth, dental decay, lung and kidney manifestations, lymphoma, neuropathies, and more. Diagnosing children is similar to diagnosing adults such as using blood tests and lip biopsies but it can be more challenging because they may not be able to clearly identify or describe their symptoms.
Jazlyn is now a teenager just beginning high school. She enjoys volleyball and baking and loves to hang out with her friends. She’s even talking about going into the healthcare field so she can help kids like her someday. When you ask her what advice she would give to other young people with Sjögren’s, she says she would tell them “it sucks” but that it is very helpful to share experiences with others dealing with the same symptoms so you don’t feel alone. Jazlyn loves her doctor, a pediatric rheumatologist, and feels lucky to have her because she always listens and explains everything very clearly. She is now just beginning to deal with dryness symptoms in her eyes, nose and mouth and like many Sjögren’s patients, she has been diagnosed with other autoimmune diseases, specifically, rheumatoid arthritis and possibly lupus. She describes her coping mechanisms that she would pass on to other young people with Sjögren’s: “Get lots of rest, exercise, take medications as prescribed by your doctor, use a heating pad and use a humidifier overnight”.
The Sjögren’s Foundation website states that the treatment and management of childhood Sjögren’s is actually quite similar to that of adults. Corticosteroids (prednisone), hydroxychloroquine, and immunosuppressants such as methotrexate may be used. Regular visits with rheumatologists, dentists, and eye care professionals are essential to prevent long term damage to teeth, eyes, and organs.
Candi and Jazlyn are both very committed to increasing awareness about pediatric Sjögren’s. They have been involved with the London support group and recently Jazlyn told her Sjögren’s story as part of the London Virtual Walk for Sjögren’s. In addition, they have become contact persons for the Sjögren’s Society of Canada to support other families with young Sjögren’s patients. Candi says that she tries to be open and honest with other parents about her experiences with her daughter’s Sjögren’s diagnosis and really listens to their stories. She says “It’s a good feeling knowing that maybe I can somehow help someone not feel so alone in this journey”. As far as advice that she gives to other parents, she suggests they get involved with a local Sjögren’s support group and generally, that they remain positive knowing that an early diagnosis means earlier treatments.
When asked about her greatest challenge, Candi says, “always having to stay strong emotionally especially early on in Jazlyn’s diagnosis. Moms feel like they have to put on a happy face so their child doesn't get scared”. Now more than anything, she is so proud of Jazlyn. “She's been so mature and responsible for her health and has a real interest in spreading Sjögren’s awareness!”