The first-ever United Nations (UN)’s World Duchenne Awareness Day (WDAD) or World Duchenne Muscular Dystrophy Day was observed across the globe on 7th September 2024 to raise awareness about Duchenne and Becker Muscular Dystrophy (DMD/BMD), a genetic disorder that affects muscles.
- The day promotes education, advocacy, and social inclusion initiatives to improve the quality of life for those who have dystrophinopathies.
Theme:
The theme of WDAD 2024 is ‘Raise your voice for Duchenne’, which creates a society that provides equal opportunities for all.
Background:
i.In 2014, the two active members of the World Duchenne Organization (WDO), Elizabeth Vroom, the President and Nicoletta Madia, the Community Coordinator initiated the observance of WDAD on September 7th to raise awareness about DMD.It was first observed in 2014.
ii.On 29th November 2023, the United Nations General Assembly (UNGA) adopted the resolution (A/RES/78/12) and officially designated 7th September of every year as World Duchenne Awareness Day, starting from 2024.
Note: WDO (formerly known as United Parent Project Muscular Dystrophy – UPPMD) is the Netherland based federation of organisations representing patients and their families around the world.
About Duchenne Muscular Dystrophy:
i.Duchenne Muscular Dystrophy is named after Dr Duchenne de Boulogne, a French neurologist, who was one of the first to report the disease in detail in the 1860’s.
ii.It is a genetic disorder characterised by muscle degeneration and weakening caused by alterations in a protein known as dystrophin, which keeps muscle cells intact.
iii.Duchenne muscular dystrophy (DMD) is a dystrophinopathy, a group of inherited muscle disorders that are caused by mutations in the dystrophin gene
- The dystrophinopathies cover a spectrum of X-linked muscle disease like DMD, Becker muscular dystrophy (BMD), and DMD-associated dilated cardiomyopathy (DCM).
Symptoms:
i.The principal symptom of DMD is muscle weakness. It can begin as early as age 2 or 3.
ii.The affected child suffers difficulty in jumping, running, and walking. Other signs include calf enlargement, waddling gait, and lumbar lordosis (an inward curve of the spine).
iii.The heart and respiratory muscles are also affected and eventually cause acute respiratory failure.
