According to the World Health Organization, medical discrimination against women creates barriers in diagnosis and access to treatment for rare diseases. Women also bear the disproportionate brunt of caregiving for people with rare diseases.

Diagnosis :

Within an already long and tedious process to receive a diagnosis, women tend to be diagnosed for rare diseases later than men
On average, symptom management after diagnostic confirmation takes longer for women, and therefore treatment and care for women is delayed This leads to a rapid progression of the disease, further affecting the quality of life and mental health of the patient. A long drawn-out diagnostic process also leads to financial strain for female patients. Reasons for this gender gap are mostly abstract, and largely supported by women’s testimonies. One hypothesis posits that women’s ill health is often attributed to their hormones, and their symptomsare taken less seriously. (https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health)

Caregiving :

Women, typically either the mother or the spouse of the patient, most often act as caregivers for people with rare diseases. Providing care takes time and energy, around 6-8 hours per day, leaving women little option but to be full-time caregivers. This exposes women caregivers to higher risks of socioeconomic stress as well as perpetrating the stereotypes that confines women to caregiving tasks. The care they provide is often unpaid, contributing to the gender pay gap. Female caregivers face higher risks of unemployment, social exclusion, and increased vulnerability.

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