Celebrating Rare Disease Month: Bet You’ve Probably Never Heard of OEIS Complex!
Neela Even many medical professionals may only see it once — if ever. OEIS complex is an extremely rare congenital condition , estimated to occur in about 1 in 200,000–400,000 births . The name OEIS comes from the four main features present at birth: Omphalocele, Exstrophy of the cloaca, Imperforate anus, and Spinal defects . It is complex, life-altering, and requires highly specialized medical care from day one. Because OEIS is so rare, finding experienced medical teams is a major challenge . Families often must deliver at or relocate to major tertiary hospitals. For those living in rural or remote areas , access to ongoing care can mean constant travel, long separations from home, and limited access to knowledgeable providers, therapists, or trained caregivers once they return home. OEIS is not a “one-time fix.” Across a lifetime, individuals with OEIS may face: Multiple, staged surgeries beginning in infancy Long-term bowel and bladder management needs Mobility c...