The expert explained the need to help mothers of children with rare diseases

The birth of a child with a rare (orphan) disease takes a woman out of her usual social and professional context, even her basic needs fade into the background, Alyona Kuratova, head of the Butterfly Children Charity Foundation, founder of the Rare Women project, told Izvestia.

"In the early years, the whole life of such a mother is subordinated to care: medical procedures, examinations, hospitalizations, condition monitoring and, most importantly, anxiety for the child's future. Against this background, a woman's own desires, career plans, and even basic needs fade into the background," she said.

Over time, the situation only worsens: a woman gets into a vicious circle where chronic stress, emotional burnout, social isolation and financial instability do not allow her to find resources for work, development and any kind of self-realization, she explained.

"In order for a mother to work, study or start her own business again, it is necessary first to restore her psychological state, to teach her how to build a balance between caring for her child and taking care of herself. This is what the Rare Women project is dedicated to," said Kuratova.

During the work of the project, 75 "rare" mothers have already completed professional retraining, more than 20 have opened their own business or entered the labor market. Such a return to life is very important: the psychological state of a mother directly affects the quality of life of her children.

According to Kuratova, even with the most difficult diagnosis, a mother's life should not be reduced to servicing the disease, which in this case turns out to be the only meaningful content of a woman's life.

Read about how "rare women" get out of such a difficult situation and arrange their own lives in the Izvestia article.

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