中華民國肌萎縮症病友協會 - Taiwan  Muscular  Dystrophy  Association
  English introduction
     
     
     
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* English introduction
 

 

Taiwan  Muscular  Dystrophy  Association

 

About Muscular Dystrophy

The muscular dystrophy (MD) is a kind of non-contagious genetic disease.  There are many types of muscular dystrophy, including Duchenne, Becker muscular dystrophy, and Spinal Muscle Atrophy, and so on.  Duchenne is the most common muscle disorder and also the most serious one among all these types.   These types are characterized by progressive weakness and degeneration of the skeletal muscles that control movement.  Though these types are different in terms of pattern of inheritance, age of onset, rate of progression, distribution of weakness, and life expectancy, patients have quite similar progression of muscle weakness, functional disability, and loss of the ability to walk and oftentimes die of respiratory failure or cardiac arrest once the disease affects respiratory and cardiac muscle. 

 

About Us

The association was established on the 11th of Feburary, 1996, when muscular dystrophy is still foreign to the society and to medical professionals.  Patients and their families face not only torture from the disease, judgments from other people, but also from their own struggle in accepting and living with the disease.

In order to raise public awareness toward muscular dystrophy, some ardent families, with the assistance from Koahsiung Medical University Hospital, established the Taiwan Muscular Dystrophy Association.  The mission of the association is to gather patient families and social resources to assist patients and their families in solving medical and life problems and to improve the quality of patients’ lives. 

 

Our Mission

To protect patients’ medical rights

To improve patients’ social status

To advocate public education

To assist patients in obtaining employment

  

Our service:

1. To provide assistance to patients and their families through home visits and patients and family growth activities

2. To organize public publicity regarding patients’ rights and campus advocacy

3. To subsidize genetic screening fees

4. To provide education assistance, counseling service and volunteer service 5. To publish foundation magazine

 

A patient’s testimony: 

As a patient of Muscular Dystrophy with crippled legs and arms, I cannot carry a briefcase, drive, or do something I like, but can only sit in my wheelchair, which is actually my whole world.   Besides suffering from not being able to move around, I feel sorry for becoming a heavy burden for my family.  Thanks to my patience and determination, and support from my family, I never give up hope and keep pursuing my dream.  However, unfortunately, there’s no any effective treatment to cure or control this disease.  Many patients’ family members give up their jobs to take care of the patients, and have been suffering from various injuries such as sprain in the joints, the waist, and the back due to constant carrying patient on and off the wheelchair, to bathing, to the toilet and to go out.  Other than the above-mentioned problems, adult patients’ elderly parents have to worry about patients’ live after they die. 

As a patient, I hope the government and general public could give us a hand through proper distribution of social welfare funds, barrier-free environment, and assistive technology.  In developed countries, patients have undergone tracheostomy can still lead an independent life, have jobs and travel abroad, with the assistance of assistive technology and complete social welfare system.  With proper assistive technology, patients, even at the ending phases of their disease, can still maintain their quality of life.                                                                                                                                  

 

Contact us

Add:3F-3, No. 58, Jiuru first St., Sanming Area, Kaohsiung City, 807 Taiwan R.O.C. 

Tel: (886) 7 3801000 Fax: (886) 7 3800231   

Website:http://www.mda.org.tw

Email: tmda@mda.org.tw

 

 
 
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