Posted by: patricia_tinggx | January 28, 2010

progressive research about Muscular Dystrophy Association and opinion

Research

My group is doing on the Muscular Dystrophy Association Singapore(MDAS) which was formed in 2000 march. It is a self help organization. It is created to improve the life of people with Muscular Dystrophy. Muscular Dystrophy is the name of the combine of different muscle diseases. Muscle diseases such as muscle weakness, wasting and contractures are usually progressive and may also be dangerous to the life. The diseases obvious in childhood and some may begin at a later age. It is normally inherited. There is still no cure for Muscular Dystrophy. People know the is this diseases but not all know there is an organization for it and also the symptoms of it.  So we have to help them create awareness by using new media tools.

The  MDAS does not call people patients but call them members. The MDAS wants to provide care and support towards the members. They want to provide health and public education on Muscular Dystrophy so that more and more people can volunteer to help them.  Lastly to support medical research so that they can find a way to cure Muscular Dystrophy.

There are many types of Muscular Dystrophy. Some of it are:

  • Duchenne Muscular Dystrophy- Only affect the boys, as boys don’t have a sanother X-chromosome to exchange for an abnormal X-chromosome. It occur in 1 out of 3000 new born baby.
  • Becker Muscular Dystrophy-Most of the patients are boys age 11 or above and this type is less serious than others.
  • Limb Girdle Muscular Dystrophy- Both sexes affected
  • Facioscapulohumeral Muscular Dystrophy- Both sexes affected
  • Myotonic Dystrophy- Both sexes affected as the abnormal genes do not reside in the X-chromosome. It cause stiffness in muscles.
  • Congenital Muscular Dystrophy-The patients is affected with this since birth and is seriously weakening the muscles.

There are different type of Muscular Dystrophy because of the pattern of inheritance, origin of the genetic mutation, age of onset, rate of progression, prognosis, incidence and symptoms. Different cause and outcome require different treatments.

The symptoms of Muscular Dystrophy consist of the patients with muscle diseases and is weak. it usually involves muscles close to hip, shoulder muscles and some other. The patient will have difficulty in walking, running. climbing stairs, standing up and carry heavy things. In young children, it will delay the time to walk, run and stand. It is because of muscle wasting which causes the weakness.

There are programmes to improve the life of people with Muscular Dystrophy such as life skills & enrichment and many others. The have use some media to create public awareness such as the MDAS website which is launched in 2001, a forum launched in 2004, MediaCorp Radio YES 93.3FM in 2004, Asiasoft Online Pte Ltd in 2008 and some others.

There is no ways to cure muscular dystrophy.  There are only therapy exercise and surgery to control it. Steroids have used to slow down the disease. There is recommended Genetic counseling for families who are affected.

Opinion

I have learn a lot after i research. Before this NMT project, i have only heard on Muscular Dystrophy and does not know about the details of muscular dystrophy. After researching, i find that people diagnose with muscular dystrophy are very unfortunate as they cannot choose as it is genetic.  They have to leave with the diseases for their entire life. I think everyone should know about muscular dystrophy to prevent their kids to get. Girl from a father who has a muscular dystrophy is a carrier thus if she have a son, the son will have muscular dystrophy while if it is a daughter, she will be a carrier. Thus i think it is important for people to know more about muscular dystrophy. My group decide to create awareness by creating a facebook group, a quiz and advertising in facebook as many people is using facebook now and they use it everyday thus using facebook will create awareness to others.


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