From September 7-9, 2023, the Rare Fair took place in Research Triangle Park, North Carolina, with the option for online attendance. This event, which originated in 2018, is organized by The Dash Alliance. This year’s edition was co-hosted by Rare Revolution Magazine, a publication dedicated to rare diseases. Patient Worthy had the privilege of attending the event and providing social media coverage.
One of the sessions at the fair focused on a report jointly compiled by Rare Revolution Magazine and Alexion Rare Disease. The report presented the results of a survey involving families affected by rare diseases. More specifically, the survey participants were the siblings of children living with rare diseases.
Rarely do we pay attention to the experiences of rare disease siblings and the potential impact that growing up with a rare disease sibling might have on their development, upbringing, and overall perspective. When there is a chronically ill child in the family, parents often have limited time to devote to their unaffected children, leaving them feeling undervalued. However, the survey results revealed that many siblings felt a strong sense of dedication to their rare disease sibling and often took on caregiving roles at a young age. In fact, 86% considered themselves caregivers.
Among the surveyed siblings, 72% reported that living with a rare disease sibling had a negative effect on their mental health, and 52% indicated that they were not receiving any mental health support. Siblings also reported strained relationships with their parents, who were required to dedicate the majority of their time and attention to the child with a rare disease. Nevertheless, as they grew older, many siblings gained a better understanding of the necessity for extra parental care and time. Despite this, the lack of attention during their formative years can have significant, lifelong effects on attachment styles and, consequently, their future intimate relationships.
In summary, siblings of rare disease patients require more support for their mental health. While this responsibility typically falls on parents, the demands of caring for a chronically ill child often leave them with limited capacity. Professional support could make a significant impact in this regard.
Siblings also expressed concerns about the future, particularly regarding how care for the patient might change when their parents pass away or become too old. Some siblings expressed a willingness and devotion to the idea of caring for their rare disease sibling in later life. Additionally, having a rare disease patient sibling had effects on their education and their plans to start families of their own.
