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Skarlett 4 (Diagnosed at 4)

Please finish the following sentence: "Sjögren's has taught me...":
To be patient with myself when I'm feeling sick or frustrated, and to learn how to describe what I'm feeling in my body.

What are your most difficult symptoms?:
I keep having pain in my cheek (parotitis), and sometimes I can't taste the food I'm eating. That's really frustrating, especially when I'm eating ice cream. I go through waves of insomnia which is hard on me and my parents.

How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I have hypermobility issues. I want to be active and do things like gymnastics, but my body feels too tired. I really struggle emotionally. My body is feeling lots of things, and I don't know how to express all of it.

How do you effectively cope with the complexity of symptoms?:
It's a lot to manage, and I'm still learning how Sjögrens is affecting me. I currently have appointments with or referrals put in to see 5 different specialists each dealing with a different part of my body.

What do you wish people knew about your Sjögren’s?:
I wish people knew that little kids can have Sjögrens too. Even some of my pediatric doctors haven't seen someone my age with Sjögrens. It's more than just dry eyes and mouth. I don't even have those symptoms. It affects my whole body.

How do you incorporate self-care with managing Sjögren's?:
I like to distract myself with fun activities and playing with my friends.

What’s your best Sjögren’s tip?:
Sometimes I wake up in the night feeling itchy and thirsty, so I keep lotion and a water bottle by my bed. If something feels off in your body tell your doctor even if you aren't sure it's related to Sjögrens. It could be a missing piece to your puzzle.


To learn more about Sjögrens in Children click here