News — The Klinefelter Syndrome Program at Ann & Robert H. Lurie Children's Hospital offers comprehensive care for individuals with Klinefelter syndrome. The program’s unique multidisciplinary approach addresses the medical, developmental and psychosocial needs of the patient population. While the program focuses on Klinefelter syndrome (47,XXY), it also provides care for other X and Y chromosome variations, including 47,XYY, 48,XXYY, and 48,XXXY, and 49,XXXXY. The program is led by pediatric endocrinologist Courtney Finlayson, MD.
The program is a regional and national center for referrals. Patients travel to Lurie Children’s for the comprehensive care that few programs can provide.
The clinic brings integrates specialists from endocrinology, urology, genetic counseling, social work, psychology, and neuropsychology. Because Klinefelter syndrome is highly variable, patients may experience few or many differences in health and development. Each patient’s care team is tailored to their unique needs, and adapts as their needs change. In the clinic, patients can meet with their various specialists in one location on a single day, saving time and effort in coordinating their care.
Neuropsychology is a unique resource of the program, offering testing during key transitional periods of childhood to support the needs of pediatric patients as they mature. This type of testing identifies a child’s learning strengths as well as challenges, including attention, memory, language, visual reasoning, and thinking speed.
With the increase in prenatal genetic screening, more patients are being diagnosed in utero. Lurie Children’s Klinefelter Syndrome Program offers prenatal consultations through The Chicago Institute for Fetal Health, which includes genetic counseling and a discussion with a pediatric endocrinologist.
The Klinefelter Syndrome Program team is active in research and projects aiming to improve care for individuals with Klinefelter syndrome. The program is a member of Generating Advancements in Longitudinal Analysis in X & Y Chromosome Variations (GALAXY) registry, a multi-center collaboration that aims to understand X and Y chromosome variations better. GALAXY is supported by The Association for X and Y Variations (AXYS), an advocacy, education and support organization for individuals with X and Y chromosome variations and their families.
To foster appreciation and interest in exercise, the program is launched its first KidS Camp for patients ages 10-16 years with Klinefelter syndrome. The KidS Camp is an interventional research study designed to assess and improve physical fitness and quality of life in children and adolescents with Klinefelter syndrome. From September to December the kids participated in kayaking, golf, outdoor yard games, rock climbing, and bowling. They developed new skills, both physically and social emotionally, and fostered relationships with peers. This was a rewarding experience for both the campers and providers.
In conclusion, Lurie Children's Klinefelter Syndrome Program’s knowledgeable clinicians, comprehensive approach to care, and dedication to research make it a leader in the care of patients with Klinefelter syndrome.
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