Experience of chronic pain and stigma in an adolescent with hereditary multiple osteochondromas: a case report

Abstract Experiencing the effects of a rare disease during childhood shapes development. Children with rare diseases may experience mental health challenges, bullying, and/or stigmatization, along with missing key opportunities for social development such as sports and extracurricular activities. This paper examines the experiences of an adolescent with hereditary multiple osteochondromas (HMO) and the key moments that shaped her development. HMO is characterized by benign outgrowths of cartilage and bone that affect growth plates, impinge on nerves, and cause chronic pain. This narrative highlights the chronic pain experienced by a patient with HMO and her experience having the legitimacy of her pain questioned along with a lack of understanding of her disease. Healthcare providers can inadvertently perpetuate stigmas against patients with rare diseases. Thus, it is imperative that there be increased education for healthcare professionals as well as for students preparing to enter the field.