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Meet Erin: 2020 Family Advocacy Week Champion

Erin is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Erin and her family will share information about her health journey, Connecticut Children’s Medical Center’s role in providing Erin with necessary health care services, and why the public and our elected officials must invest in the future of kids like Erin.

At 17, Erin was experiencing chest pain followed by intense shoulder pain.
“Over the next few weeks, I was coming home from school exhausted and would have a fever on and off all week,” says Erin.

She was diagnosed with lupus, a chronic long-term disease resulting in inflammation and pain anywhere on the body.

“It was tough on myself and my family because we didn’t know what was wrong and my symptoms kept changing, which was very confusing,” says Erin.

Prior to diagnosis, Erin underwent X-rays and blood work to find a cause for her various symptoms. Her pediatrician could not find a diagnosis and referred Erin to Barbara Edelheit, M.D., division head, rheumatology, at Connecticut Children’s Medical Center in Hartford, Connecticut.

“I didn’t know what was wrong with me, and I wanted everything to go back to normal,” says Erin. “The staff was so kind, and the doctors did an amazing job of making it a positive place where we were going to figure everything out instead of a scary place full of questions.”

Currently, medication keeps Erin’s lupus under control and visits her doctor every six months. She loves acting, singing and directing in the theater.


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