CRMO

Kara, the mother of a child with an autoinflammatory disease, describes her family’s experiences with diagnosing, managing, and living with an autoinflammatory disease.

An expert panel with physicians, psychiatrist, and a parent of a child with an autoinflammatory disease respond to audience questions during the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA.

Introduction: Explore the role of social media in the lives of parents with children diagnosed with autoinflammatory diseases, specifically focusing on rheumatic diseases. Highlight the potential benefits and challenges of health-related social media use. Seeking Information and Education: Discuss how parents turn to social media platforms to gather information about their child’s condition, treatment options,

Importance of Education: Recognize the significance of educating healthcare professionals and the general public about autoinflammatory diseases, particularly those characterized by recurrent fevers. Understand the impact of accurate knowledge on early diagnosis and appropriate management. Small-Group Learning: Emphasize the effectiveness of small-group settings for teaching complex medical concepts. Discuss how these settings foster engagement, interactive

Fevers are tough. They make you feel lousy. They cause worry. They prevent kids from attending school and adults from going to work.

She had headaches for many years. She visited multiple doctors, including her primary care physician, a neurologist, a pain clinic, and even a headache specialist, but she was unable to find an effective treatment.

While every autoinflammatory disease is different, they share many features about how they affect the health and well-being of patients and their families, and how stress and other triggers may cause disease flares.