It is the first such clinic in Illinois, bringing to eight the number in the United States. The Angelman Foundation, based in Aurora, Illinois, and the medical center paired up to establish it.
Cesar Ochoa-Lubinoff, the clinic’s co-director, said the clinic will take a comprehensive approach to helping patients with the neurogenetic disorder.
“With the creation of the clinic, individuals with Angelman syndrome and their families can access multiple sub-specialists and a variety of medical resources in one setting, as opposed to visiting multiple locations across the nation,” he said.
The clinic will focus on symptoms that hinder daily living, including seizures and behavioral and sleeping problems. The clinic will also work with caregivers to develop educational programs for patients to help them live fully developed lives.
“Individuals with Angelman syndrome have extreme challenges obtaining the care they need as they grow into adults,” said Elizabeth Berry-Kravis, clinic co-director. “Our hospital is uniquely positioned to provide services to this portion of the population and their families.”
Often misdiagnosed as autism or cerebral palsy, the lifelong disorder causes severe neurological impairment.
Those with the syndrome, which occurs in one in 15,000 live births, can experience lack of speech, and difficulty walking and maintaining balance. They laugh and smile frequently and exhibit excitability. Because patients require constant supervision, caregivers are often overburdened and overwhelmed.
Because of the expertise and specialized care available, the Angelman Syndrome Clinic can work to improve patients’ overall quality of life — a major clinic draw.
Its specialists include neurologists, epileptologists, developmental-behavioral pediatricians, psychologists, sleep medicine physicians, rehabilitation medicine specialists, gastroenterologists, pulmonologists, speech language pathologists, physical therapists, occupational therapists, genetic counselors, social workers and nutritionists.
The medical team is also versed in cutting-edge trials and research protocols.
“Opening this clinic at Rush University Medical Center — in our own headquarters’ backyard — is an exciting milestone for ASF,” said Eileen Braun, executive director of the ASF and mother of a young adult with Angelman’s. “We are thrilled to help bring this significant resource to the greater Chicago area, and we could not be more proud to partner with Rush University Medical Center and their remarkable team of professionals to bring this clinic to life.”
The Angelman Syndrome Clinic at Rush University Medical Center is at 1725 W. Harrison St., Suite 710. For appointments or more information, call 312-942-9645.
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