An association calls for the inclusion of a rare genetic disease among the chronic diseases it treats – today 24

Kawthar Tazi, who is in charge of communication with a Moroccan association called SOS PKU MAROC, in charge of caring for children with PKU, said that the number of this group is currently 100 children.

He added, in relation to the “Youm 24” website, that the aforementioned disease is a rare genetic disease that results from a defect in the gene responsible for forming the enzyme necessary to convert the amino acid phenylalanine into the amino acid tyrosine, which causes delay severe mental and physical for affected children.

Al-Tazi blamed the exacerbation of this disease on the lack of treatment and early care, and called for its inclusion among chronic diseases that require “severe care, including treatment, diet, complementary and multidisciplinary care, in addition to the “adaptations that must be made in daily life”.

Regarding whether Morocco has food products related to this disease, the same spokeswoman explained that our country does not foresee any diet of products intended for special medical purposes, pointing out that their cost still exceeds the capacity of almost all Moroccan families, since this cost can reach 15,000 dirhams per month. .

In order to provide these products, the link of the same association explained that coordination will be carried out with an American association called HMEMSA INC, where the latter sends products every three months that are distributed to affected children in various Moroccan cities.

One of the demands of the association, which was founded in April 2020, is to classify this disease as a chronic disease and take care of it, so that sick children can enjoy a normal life, similar to some countries like France that have taken care of it since 1970, from his birth and carrying out the corresponding medical analyzes until his health coverage.
The same association is expected to organize its first forum next Saturday, where it will study ways to advocate for the classification of this disease within the list of chronic diseases, and take care of it in a comprehensive manner.