RESEARCH ROUNDUP

Inborn errors of immunity (IEIs) include almost 500 distinct heritable conditions displaying, for example, atypical infections, autoimmunity, inflammation, and risk of malignancy. IEIs can impose new limitations, routines and uncertainty, and studies of patients with IEIs have found lower quality of life and higher psychiatric comorbidities.

Given limited research on how people with IEIs positively adapt to life with a rare, chronic, unpredictable illness, Beers et al (2025) sought to address this knowledge gap by investigating features of successful adaptation to IEI over time to help providers support those who struggle to accommodate their IEI. The authors interviewed 20 self-reportedly well-adapted adults with IEI about their experiences of adaptation, and they identified three overarching themes. First, many participants struggled with shame and loss but eventually integrated their IEI into their lives through acceptance, gratitude, and self-compassion. Second, although knowledge and choice contributed to participants' perceived control, most participants were led to acknowledge that such control was limited when they had to confront unpredictable symptoms. Third, social relationships could exert either positive or negative influences on adaptation. ‘Notably, many participants found meaning in giving back to their communities, especially by educating others about their condition.’