To read the full article by Nagwa A. Meguid, Fatma Hussein, Sherien A. Nasser, Amal Elsaeid, Rasha S.El-Mahdy, Sara Elbanna, and  Ayman Kilany, please click 這裡. 

A recent study set in Egypt interviewed 40 mothers of children living with Fragile X Syndrome, focusing on challenges faced by discrimination and neuropsychiatric conditions. 47.5% of the mothers were found to be dealing with a neuropsychiatric issue, 5% with anxiety, 2.5% with comorbid depression and 40% with major depression. They also reported facing high levels of discrimination throughout their motherhood. 

There are very few studies that discuss struggles faced by mothers of children living with FXS. In fact, investigations into how the toll of primary caregiving, discrimination, loneliness and depression affects such mothers with a focus on geographic and socio-cultural differences are rare. This is one of the first studies to take a deep dive into the reality of middle-eastern mothers of children living with FXS. 

Apart from revealing that the majority of these mothers are affected by neuropsychiatric issues, the study also pinpoints important social failings. As primary caregivers, 96% of the participant mothers said that they had left their jobs to look after their children living with FXS. Older mothers showed heightened levels of stress and concerns over their child’s future and eventual dependency on them as they aged. More than half the mothers experienced unfair treatment in the form of shame and guilt for being the cause of their child’s FXS. Some also revealed that they were blamed by their own family members including their husbands for being the reason for their child’s ‘lack of discipline’. Mothers living in rural areas found the level of stigma and discrimination around them to be more excessive than those in urban areas. While less than 20% confirmed that they were able to cope alone, over 62% said that they had a close family member to support them.  Only 20% had received support from medical professionals. 

More studies on the impact of caregiving for FXS across different cultures are needed. The current EURORDIS 調查 is exploring the impact of living with a rare condition on the person with that condition and their caregivers / family members. We can garner the FXS info, and look at localities, if there are at least 30 respondents from that country. Please respond 這裡.