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Feb. 24, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Tara O’s Story in Honor of Rare Disease Day

Posted by Valaree DonFrancesco

Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several conditions before this as well. I have done a lot of research on narcolepsy and other rare diseases this past year and I have realized how people outside of the community know so little about what we go through. My goal in sharing my story is to raise awareness for not only narcolepsy, but other rare diseases as well. I do not want someone to go twenty years of their life before receiving an accurate diagnosis. 

The biggest struggle I have is getting other people without narcolepsy to understand what I am going through. They think I can control my sleepiness or that I am just being lazy. 

Having equity in health is very important to me. When I think of equity, I think that every single person deserves the same right of care with their health conditions as any other person. I feel that people who may be less fortunate should receive the same care as someone who may be more fortunate. While equity is improving in our world today, it could and should further improve. 

I plan to join the virtual events on Rare Disease Day, wear stripes, share the day on social media and print out NORD’s coloring page for my niece and nephews to color, so that they can learn of the day and its importance in a fun way.