February 8, 2023

Rachid Hamuni, head of the Progress and Socialism Group in the House of Representatives, sent a written question to the Minister of Solidarity, Social Inclusion and Family, Awatef Hiar, to talk about the measures taken to support the associations and families that accompany the Comorian people.

He explained that this group, mostly children and youth, suffers from “a rare genetic disease that affects skin with excessive sensitivity, and this disease is known scientifically as “dry pigmented skin syndrome” because it makes the patient intolerable.” exposure to ultraviolet radiation, natural or solar, a specific source of light.

Regrets the lack of official statistics in Morocco, while talking about hundreds of sick people in Morocco trying to live with this disease without the care and support of the competent public authorities, except for what civil society organizations do, who need to strengthen their intervention financial and psychological support for families infected with this costly disease.

He pointed out that these patients, especially children, are subjected to various forms of bullying that affects their psyche, in addition to their suffering in accessing medical services and purchasing certain medicines, ointments, clothes, masks, sunscreen and the cost of it.

In addition to the difficulties they face in their academic path and their suspension from work, as due to the nature of their illness, they can only work at night, which further complicates their lives.

This disease is known to be very common in a number of parts of the world, and sufferers are usually born healthy, but as soon as they are exposed to sunlight in the first months of life, unusual symptoms appear, such as reddening of the skin. skin and the inability to see light, a condition that develops When exposed to the sun for a long time, more dangerous signs appear on the skin, which are tumors that quickly turn into skin cancer over time, and the disease can quickly develop into the spread of cancer of the internal organs in some cases.

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