HomeHealthThe new campaign to support people with Duchenne Muscular Dystrophy
The new campaign to support people with Duchenne Muscular Dystrophy
September 14, 2020
Today September 7 is World Duchenne Awareness Day, one of the so-called "rare diseases" or "rare diseases", due to its low incidence. With the aim of making this disease visible, the Argentine Muscular Dystrophy Association promotes the campaign under the slogan of the World Duchenne Organization (WDO), "Together we are stronger."
The campaign will begin with the call for the digital launch of balloons and will continue throughout the week. The community will be encouraged to participate by sharing content on social networks including red balloons (drawings, stickers, or even filters), along with hashtags # JuntosSomosMásPuertes and # WDAD20.
The closing will be on Saturday, September 12, with a free and open Webinar at 4:00 p.m. which will provide details about the disease, how to perform early detection, tips for daily life, testimonies of life and resilience. It will be hosted by the journalist Guillermo Lobo, who has already accompanied the initiative years ago.
The president of the Muscular Dystrophy Association, Santiago Ordóñez, said: “It is essential that we work to achieve an early diagnosis and to make the stories of patients and their families visible. Advances in research are allowing the development of new therapeutic options, which open a great window of hope for those who suffer from this disease ”.
Every year the association organized an open call walk to the community, in which more than 1,000 people participated throughout the country in 2019. But given the context imposed by the Covid-19 pandemic, the campaign proposes the use of social networks to perform the traditional launch of red balloons which are the symbol of this disease.
In turn, the theme chosen by the Association was: "Duchenne in everyday life". In this way, the testimonies of the day to day with the disease can be shared, so that Duchenne families feel accompanied in this time of isolation and enforce the motto of the WDO: "Together we are stronger."
About Duchenne Muscular Dystrophy
This disease is a muscular condition present in 1 case every 3,600 to 6,300 newborn males, caused when the body cannot properly generate a protein called dystrophin, which muscles need to function properly.
Dystrophy is hereditary, that is, it passes from generation to generation. It is transmitted by women because it is a recessive inherited disease, linked to the X chromosome, although in up to 30% of cases the mutation occurs spontaneously, without a family history.
In approximately 80% of cases, parents are the first to detect the signs of the disease, among which are psychomotor retardation; muscle weakness; difficulty jumping, running, or climbing stairs; frequent falls; speech delay with behavior problems; and the need for help getting up off the ground or walking with the duck gait.
Early detection can help improve the quality of life for all patients, but due to lack of awareness, it usually Duchenne Muscular Dystrophy takes a long time to be diagnosed, being 5 years the average age of detection.
Usually> between 12 and 14 years of age. For this reason, obtaining an early diagnosis is essential for patients because it is a progressive disease and starting treatment as soon as possible, before significant muscle loss occurs, can help delay or slow the evolution of the illness.
While there is currently no definitive cure for Duchenne Muscular Dystrophy, there are multidisciplinary therapies available that can reduce symptoms and improve the quality of life of those who are affected.
About Muscular Dystrophy Association
A.D.M is a non-profit Civil Association founded in October 1983 by a group of people with Neuromuscular Diseases, family members and health professionals specialized in these pathologies.
Its mission is to contribute to the improvement of the quality of life of the community of people with these diseases, through actions of visibility, assistance and orientation, and promotion of the development at the national level of capacities for their diagnosis, care and treatment.