Sarah’s Journey with Prader-Willi Syndrome

January 8, 2024by Dr. S. F. Czar0

Case Study:

Sarah, a vivacious 12-year-old, had always puzzled her parents. She ate constantly, never seeming satisfied, yet remained strangely petite. Learning was a struggle, and tantrums erupted over the smallest slights. At just two years old, Sarah’s insatiable hunger prompted a genetic test, revealing the culprit: Prader-Willi syndrome (PWS).

Life with PWS became a balancing act. Growth hormone injections helped Sarah grow, but her hunger remained a constant battle. Mealtimes were meticulously planned, cupboards secured, and temptations hidden. Sarah, aware of her “different” needs, often felt isolated. School was challenging, her learning pace lagging behind despite her bright mind. Frustration built, fueling outbursts that left her heartbroken.

Sarah’s parents were her unwavering advocates. They joined support groups, sought behavioral therapy, and learned to anticipate Sarah’s triggers. Laughter became a weapon against frustration, open communication a bridge across understanding. They celebrated Sarah’s strengths – her infectious enthusiasm, her artistic flair, her unwavering determination.

Slowly, progress emerged. Sarah learned to manage her emotions, channeling her energy into art. Schoolwork, with targeted support, became more manageable. The constant hunger remained, but Sarah grew stronger, both physically and emotionally.

One day, at a support group meeting, Sarah met Emily, another girl with PWS. Their connection was instant, a shared understanding blooming beyond words. Their bond fueled Sarah’s confidence, a reminder that she wasn’t alone.

Sarah’s journey with PWS is ongoing, a dance between limitations and hope. But within her lies a resilient spirit, a testament to the unwavering support of family and the strength of understanding. As Sarah embraces her own story, she becomes a beacon, illuminating the path for others like her, proving that even in the face of an insatiable hunger, a life filled with joy and fulfillment is possible.

Maria’s Struggle with Hunger


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