In many ways, Gracie Reed, 16, a student at Bel Air High School in Bel Air, Maryland, is like any other high school junior — she’s thinking about college; planning for a career; and spending what leisure time her busy schedule allows boating, kayaking and swimming with family and friends. But there’s more to Gracie — a lot more.
For starters, Gracie has a crown and a title. She is Princess Gracie Reed, representing the Crescent Yacht Club. It’s a role that comes with both privileges and responsibilities.
“As Princess, you represent the club every weekend,” says Gracie, “at balls and yacht club events. You give speeches and champion a charity that is close to your heart.”
This year, Gracie has chosen AARDA as her charity. Her platform is Autoimmune Disease Awareness because Gracie knows, first-hand, how important and how needed awareness is. Gracie has an autoimmune disease. She learned about it just last year.
“I had taken a shower one day, right after the Princess Pageant, and some of my hair was falling out. A couple months later, my hair was breaking off all over the place. The doctors kept saying it was a delayed stress reaction. I had been under stress with the pageant, but it wasn’t that. I was having other symptoms — itching and burning.”
Gracie saw a doctor and got diagnosed last August. Although her journey to diagnosis was short compared to many, it was no less upsetting.
“The doctors told me I had alopecia areata. I’d never heard of that. There were times when I was confused. But, I was also really curious. So, I learned all I could about it. I learned that there’s no cure.”
At first, Gracie’s diagnosis made her feel isolated. But, Gracie was not alone.
“There’s a girl named Chloe (@chloeshairaffair) that I found on Instagram. I reached out to her and she replied back. We shared our autoimmune stories and found that we have lots of things in common,” Gracie says. “She handles it so well. I look up to her. When you have someone you can talk to, you don’t feel as alone.”
Gracie also talks things over with her mom, Stacey, a fellow autoimmune warrior, who has psoriatic arthritis.
“She couldn’t have a better supporter,” says Gracie’s dad, Greg. “Stacey, and I have been together since we were teenagers. At that time, the doctors thought she had Crohn’s. When we married, we decided not to pass on those genes to our children. We adopted Gracie and our son, Jacob, from Russia. She was diagnosed at the same age my wife was when she was diagnosed. It’s funny how things from above work out.”
Although Gracie is in a good place right now, her autoimmune journey is not without its challenges.
“I still get bald spots. I get frustrated with it–the symptoms, the treatments. When I’m not wearing my wig, I know people are probably wondering what’s wrong. I figure they just don’t know,” says Gracie. “If there was more awareness; there would be more understanding.”
Gracie is raising awareness and donations for AARDA through a series of Princess Fundraisers. She also posted a Facebook Fundraiser on AARDA’s page and has met her $5,000 goal and is continuing to fundraise. She’s hopes her efforts reach more young people like her.
“People ask me what advice I’d give to other teens,” Gracie says. “My advice is, be yourself and don’t let others discriminate against you. Be yourself and be strong. Your autoimmune disease doesn’t define you.”
Once a year, princesses from more than 30 yacht clubs compete to be crowned Queen of the Chesapeake. Gracie will be competing this year at the end of June.
According to the National Alopecia Areata Foundation, a member of the National Coalition of Autoimmune Patient Groups, approximately 6.8 million people in the U.S. have or will develop alopecia areata at some point in their lives.