How does duchenne muscular dystrophy affect daily life?

Living with a genetic or rare disease can impact the daily lives of patients and families. Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s. 
 
There are a number of methods that people with this disease can utilize to improve their daily life with this disease: 
 
  • Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources and services.
  • Journals and medical websites are also useful to provide helpful general and in-depth medical assistance. Becoming as up to date and aware of the illness is a very important method of managing this disease.
  • Organizations such as Coalition Duchenne, CareDuchenne, Duchenne Connect, and Muscular Dystrophy Association are great resources for help. Many of these great organizations also have experts who serve as medical advisors or provide lists of doctors and clinics.

 

 

 

 


Sources:

  • “Duchenne Muscular Dystrophy.” Genetic and Rare Diseases Information Center, U.S. Department of Health and Human Services

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