it affects 30,000 people in France, a walk to help research on retinitis pigmentosa

Sunday 03rd November 2024 05:52 AM

A walk for sight took place on Saturday November 2 in Sainte-Marie-la-Mer in the Pyrénées-Orientales. Objective: to raise funds for research into retinitis pigmentosa. An extremely rare eye disease that can affect people of any age.

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Some 170 walkers set off from the communal hall of Sainte-Marie-la-Mer near Perpignan in the Pyrénées-Orientales. At the head of the procession Liam, 7 years old. The little boy is affected of a rare disease that significantly reduces his eyesight. So all these people behind him.“It warms my heart,” smiles the child, interviewed by our France 3 Catalan Country team.

This third edition of the walk for sight is dedicated to research into retinitis pigmentosa. A pathology that Grégory was diagnosed with 10 years ago and which handicaps him on a daily basis: “I have a reduced visual field. This poses a problem, particularly when avoiding obstacles.” Only drug treatment exists but treats very few cases.

Specialists therefore focus on possible operations. “This disease affects approximately 30,000 people in France and children from early adolescence to the age of 40, according to institutes.” precise Béatrice Bocquet, geneticist at the Institute of Neurosciences in Montpellier.

For the association, this event is also the way to raise awareness of this pathology

“The three solutions are first to replace the defective gene (classic gene therapy), the second solution consists of cutting the causal mutation using molecular scissors, and the third is to prevent the mutation from being expressed, add Nadine Lhuillery, vice-president of the IRRP association (Retinitis Pigmentosa Research Institute).

Organizers hope to match last year's amount which amounted to more than 2,000 euros.