Connective Issues Fall 2023

HEALTH FAIR Provides Essential Care for Attendees The39 th Foundation Conference, co-hosted by Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern Medicine, kicked o ff with the Health Fair on July 13-14 at Lurie Children’s in downtown Chicago. More than 35 medical experts from across the country dedicated their time over two days to making a di ff erence, providing access to screenings and assessments, echocardiograms, eye exams, lung-function testing in one location. Sixty-eight attendees and their families took advantage of this unique opportunity to receive medical advice from top experts in Marfan, Loeys-Dietz, VEDS, and related conditions. Here are two families’ experiences at the Health Fair.

 The Allen Family, Massachusetts Meet Cameron Allen, a vibrant 17-year-old with Marfan syndrome, and his mother, Sue. “We never considered attending the Health Fair because we assumed all our medical needs were being met,” said Sue. “But when Cameron needed to see a pulmonologist urgently, we turned to the Health Fair for help. The experience turned out to be a bonus win as we found expert specialists who knew all about Marfan syndrome and were readily available.” At the Health Fair, they discovered how Marfan syndrome could impact various aspects of Cameron’s body beyond cardiology, ophthalmology, and orthopedics. They were able to meet with a pulmonologist, an orthopedist specializing in feet and ankles, an allergist, and a geneticist who provided valuable insights on how the condition is passed down, genetic testing, and family planning. “I personally thought I knew just about everything I needed to know, but the Health Fair opened my eyes to many aspects I had never considered,” said Cameron. “I quickly learned that each doctor had their own variations of diagnoses and treatments.” According to Sue, the Health Fair experience taught

her the significance of having an army of health professionals on their side. “Not every health professional is created equal, especially when dealing with a rare medical condition like Marfan syndrome,” she said. “At the Health Fair, we realized the importance of finding specialists who truly understand the condition and can provide individualized health advice and treatment for the whole person.”

 Dr. Adam Bitterman, an orthopedic surgeon and foot and ankle specialist, examines Cameron. Circle: Dr. Adam Bitterman, Cameron, and Sue.

“I personally thought I knew just about everything I needed to know, but the Health Fair opened my eyes to many aspects I had never considered.” ~Cameron

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Marfan.org