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arthrogryposis

At just 5 years old, Frankie is already proving that determination knows no bounds. Born with Arthrogryposis Multiplex Congenita (AMC), she has trouble with her joint moving the way it should. But with the expertise of the orthopedics team at Nemours Children’s Hospital, Delaware – including Dr. Jennifer Ty for upper extremities and Dr. Reid Nichols for lower extremities – Frankie has gained strength, confidence, and the tools she needs to thrive. During her mother, Lindsay’s, 11-week ultrasound, doctors noticed an unusual positioning of Frankie’s arms. This was a moment that changed everything for Lindsay and her family. “The rest of the day is a blur,” Lindsay shares. “We started genetic testing, but there were no solid answers. It was very overwhelming.” Uncertainty followed Lindsay and her family throughout the pregnancy, with no definitive diagnosis until Frankie’s arrival. But one pivotal meeting at 36 weeks helped to ease some of […]

On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals. Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive. In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies […]

When you hear statistics like “1 in 3,000” or “only 104,000 in the U.S.,” it’s hard to feel like others understand what you’re going through with a rare condition such as arthrogryposis. So, imagine how wonderful it must have felt for the nearly 130 people who gathered for the Arthrogryposis Mini Meet-Up recently held at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. A condition of the joints and muscles, arthrogryposis impairs children’s abilities to use their shoulders, wrists, fingers and lower extremities. There are many variations — some mild, some severe. There is no cure for arthrogryposis, but there are treatments that can help to maintain and maximize a child’s range of motion and function. The goal of the Mini Meet-Up was to bring together kids and adults with arthrogryposis so they could share their stories, their experiences and their support with each other. And, perhaps most important, […]