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Meet Annelise: 2018 Family Advocacy Day Champion

Connecticut_Children's_Medical_Center_Bedan__Annelise.jpgAnnelise is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Annelise will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Annelise was 3 years old when the symptoms of lupus — a chronic autoimmune disease that can cause damage to a person’s skin, joints and organs — first appeared. But it would be another five years until Annelise’s mother, Cheryl, had a definitive diagnosis.

“We were given mixed and confusing information for a period of time with diagnoses of other autoimmune diseases,” recalls Cheryl. “We didn’t receive a concrete diagnosis until we met with a rheumatologist at Connecticut Children’s Medical Center.”

Under the care of her now favorite health care provider, Barbara Edelheit, MD, Annelise is able to identify the symptoms and oncoming flare-ups associated with lupus readily so that treatment can begin sooner. Dr. Edelheit makes Annelise feel comfortable, listens to Annelise, and is considerate of her feelings and opinions when making decisions about treatment.

“Lupus constantly attacks my body,” said Annelise. “The toughest thing about living with lupus is waking up with pain.”

Despite living with an incurable disease, Annelise remains a very positive, determined, smart and silly person. She never lets lupus control her. She always attempts to lead a typical life without letting her symptoms get in the way. Many people say they cannot tell she has health issues. She always does the best she can to persevere.

This coming fall, Annelise begins high school and will be attending an aqua science program each day, laying the foundation for a major in marine sciences. She is also looking forward to participating in theater and dance, two of her favorite pastimes.

Join us in welcoming Annelise to 2018 Family Advocacy Day!


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