DUCHENNE ACTIVE CROWD
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Duchenne Active Crowd
Information about website
This website was created by a group of parents, who have children with Duchenne / Becker’s ( DMD / BMD ) muscular dystrophy. Information on this website are available for parents and young men with DMD / BMD who live in Slovak Republic – therefore it is written in Slovak language. It contains basic information about muscle diseases and about care of children with DMD / BMD from the parent’s point of view. The important section is Research, where there are information about Research, Clinical Trials and Studies of possible treatments. There is also a photo – gallery of our boys from actions we participated in, advisory service and chats.
Information about a disease
Muscular dystrophy ( MD ) refers to a group of genetic, hereditary muscle diseases that cause progressive muscle weakness. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins and the death of muscle cells and tissue. Genetic cause – these conditions are inherited and the different muscular dystrophies follow various inheritance patterns. The most common forms, Duchenne and Becker’s muscular dystrophy are inherited in an X – linked recessive pattern, meaning that the mutated gene that causes the disorder is located on the X chromosome, the gene that makes a protein dystrophin. This protein helps muscle cells keep their shape and strength. Without it, muscles break down and a person gradually becomes weaker. In about two thirds of DMD / BMD cases, an affected male inherits the mutation from a mother who carries one altered copy of the DMD gene. The other one third of cases probably result from new mutations in the gene. DMD / BMD affects mostly boys. Symptoms usually start between ages 2 and 6. By age 10 or 12, kids with DMD often need to use a wheelchair. The heart may also be affected and people with DMD / BMD need to be followed closely by a lung and heart specialist. The prognosis for people with MD varies according to the type and progression of the disorder. People with DMD usually do not survive beyond their late teens or early adulthood while people with BMD live into adulthood with only moderate disability. There is no known cure for MD, but doctors and scientists are working hard to find one.
OMD ( an organization of people with MD ) in Slovak Republic
OMD is our parent organization. It is a not for profit organization which provides a range of free services to people affected by neuromuscular conditions with an office in Bratislava. OMD provides unique services for members including specialized information regarding neuromuscular conditions, quarterly publication of Ozvena magazine, social, legal and psychological counseling, informative website – www.omdvsr.sk, assistance with funding applications. OMD organizes annual summer – camps for children and their parents, where every camper has his or her own one – on – one volunteer, who helps with all aspects of both fun and personal care. OMD organizes also annual meetings for all members with conference. When medically prescribed, OMD assists with the purchase of wheelchairs, hoists and other compensative aids.
The Parent´s group DAC
During the summer camp ( year 2008 ) parents agreed to do something more for their children then they did before. Therefore they established a project called Duchenne active crowd. Our main purpose is to inform parents and the public about everything connected with the diagnosis of our children. We are going to work on our own projects which will lighten not only our lives but also the work of doctors who care about our children. They will also help us to communicate better with each other. We are going to prepare such a conditions for new diagnosed families so that they will be able to go through the initial period and will be ready to fight for their children as much as we are.
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