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Feb. 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Rare Disease Day 2022: Grace’s Story

Posted by Julie Ostroff

I am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years.

There are so many ways my condition has affected my life in both bad and surprisingly good ways. On one hand, sometimes my day-to-day life can be hard. It’s difficult to be the only one of your friends who isn’t playing sports or isn’t attending sleepovers because of pain or discomfort. On the other hand, since being diagnosed, I’ve been able to build a platform for other kids struggling and it has been the most rewarding thing I’ve ever done.

Rare Disease Day is a day that embodies the word “rare” in the best sense. People diagnosed with rare diseases often feel alone and abnormal, but this day has the potential to give power to those people and to make them feel represented and important.

Everyone should know that just because you can’t always see a rare disease does not mean that it’s not there. The reality of a lot of rare diseases is that they are “invisible.” People can be suffering on the inside without it showing on the outside. Invalidating the struggles that people go through just because you can’t see or understand it is something that is too common.

Health equity means equal effort. Just because there are so few of us with rare diseases does not make us any less worthy of help. Millions of dollars are poured into so many conditions to help them find cures and treatments, and we just want that same representation. At the end of the day, everyone deserves help when they need it.

I am going to continue to work on spreading awareness about my condition, to help future patients if nothing else. I intend to show solidarity to all those struggling with other rare diseases that I don’t personally understand, because their strength isn’t acknowledged enough.