There are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.
Rare Disease: Amniotic Band Syndrome
Brief Description: Amniotic band syndrome is a condition potentially associated with a variety of different birth defects. It is important to note that no two cases of amniotic band syndrome are exactly alike and that the associated symptoms are highly variable. The severity of amniotic band syndrome can range from a single, isolated finding to multiple, disfiguring complications. The arms and legs are most often affected. The head and face and, in some cases, various internal organs can also be affected. Amniotic band syndrome is estimated to occur in anywhere from 1 in 1,200 to 15,000 live births. No gender or ethnic predispositions have been identified with amniotic band syndrome. The symptoms vary greatly from one infant to another. Some infants develop only mild complications; others develop severe and even life-threatening complications. Most infants with amniotic band syndrome have some form of deformity of the arms and legs or fingers and toes. One or more limbs may be affected. Upper limbs are affected more often than lower limbs. In some cases, one limb or one hand or foot may be the only symptom of the disorder.
Rare Connection: University of Central Florida (UCF) linebacker Shaquem Griffin recently won the 2018 Uplifting Athletes Rare Disease Champion award. A Florida native, Griffin was born with amniotic band syndrome. As a youngster, Griffin tried to “play through” the pain. But, the pain became unbearable and the decision was made to remove his left hand when he was four years old. In every phase of life, Griffin refused to let his rare disorder slow him down or hold him back — especially on the football field as a UCF Knight. The star linebacker was named the 2016 American Athletic Conference Defensive Player of the Year in his first full season as starter. This season, he was a big-time impact player for the UCF defense and he helped guide the Knights to a conference championship and, most impressively, a perfect 13-0 season with a victory over Auburn in a coveted New Year’s Six bowl. Griffin’s dream of joining his twin brother, Shaquill, in the NFL is close to becoming a reality. Shaquem had an outstanding week at the Senior Bowl and within the last week received an invitation to the 2018 NFL Combine.
Learn More: The treatment of infants and children with amniotic band syndrome is symptomatic and supportive. For more information, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.