OBJECTIVES: Social support (SS) may be an essential resource for those living with rare disease due to lack of approved therapies. Here, we describe and compare the distribution of SS among patients with sickle cell disease (SCD), alopecia areata (AA), and idiopathic hypersomnia (IH).

METHODS: Adults who self-reported a physician diagnosis of SCD (n=71), AA (n=600), or IH (n=105) on the 2022 National Health and Wellness Survey were analyzed. The Modified Medical Outcome Study Social Support Survey (overall, emotional, and instrumental support summary scores; higher scores = greater support), measured SS. Levels of SS were examined for each disease cohort using descriptive statistics. Bonferroni corrected pairwise comparisons examined differences in SS across groups.

RESULTS: Patients with IH had lower mean [SD] levels of overall SS than patients with SCD and AA (57.4 [27.7] vs 64.0 [27.6] vs 64.0 [26.8]). This was true for both instrumental and emotional support. However, only emotional support was significantly lower among patients with IH compared to those with AA (57.3 [29.4] vs 65.8 [27.4]; p=0.01). Males with IH reported greater overall SS than females (64.7 [27.7] vs 53.0 [27.0]) and there were no differences in the level of SS (all types) across males in the three disease cohorts. Conversely, females with IH had significantly lower overall SS compared to patients with SCD and AA (p=0.04). Instrumental support was significantly lower among females with IH verses SCD (53.7 [29.8] vs 68.1 [29.6]; p=0.04), whereas emotional support was significantly lower among females with IH versus AA (52.3 [28.6] vs 64.9 [28.3]; p<0.01)

CONCLUSIONS: Females with IH reported less SS than those with SCD and AA. Historically, women experience greater bias in healthcare, and subsequent underdiagnosis for many conditions. Clinical challenges to identifying and diagnosing “invisible” conditions, like IH, may be compounded by these social contexts, and contribute to feeling less supported.