91 - 8039591919
info@healtho5.com

Patient Engagement in Muscular Dystrophy:

Muscular Dystrophies (MD) are a group of rare genetic muscle disorders characterized by progressive skeletal muscle weakness over time. According to most estimates, the prevalence of muscular dystrophy in India is about 350,000- 500,000, though no reliable studies/registry exist in this field. With newer drug and organized care patient with MD can now live longer and enjoy better quality of life

Major goals are early diagnosis and establishment of a rehabilitation plan, maintenance of ADL and ambulation as long as possible, the anticipation of complications, and the development of a program of prevention and supportive counseling to patient and family.

Muscular dystrophy has no cure, but acting early may help an individual with muscular dystrophy in getting the services and treatments needed to lead a healthy life. Muscular Dystrophy can affect a person physically and emotionally. Proper monitoring, patient engagement, and support groups help them understand and come to terms with their condition. As the symptoms of Muscular dystrophy changes with time and involve various organs, experts have stressed that best management of MD requires coordinated and multidisciplinary effort. It is important to monitor the symptoms on a regular basis and to get help, care and support as early as possible. Clinical management requires the use of a well-designed scale to measure patients’ functional status. Because of the severity of disease, patient and their family should be actively engaged for maximum benefit.

A comprehensive rehabilitation plan for patients with MD includes periodic monitoring for progression of the disease, regular support, and counseling, screening for complications, organize support groups, etc to ensure the best quality of life and health outcomes.

References:

  1. Yen-Mou Lu and Yi-Jing Lue (2012). Strength and Functional Measurement for Patients with Muscular Dystrophy, Muscular Dystrophy, Dr. Madhuri Hegde (Ed.), ISBN: 978-953-51-0603-6, InTech
  2. Yi-Jing LueChwen-Yng SuRei-Cheng YangWei-Lieh SuYen-Mou LuRong-Fong LinShun-Sheng Chen. Development and validation of a muscular dystrophy-specific functional rating scale. Clinical Rehabilitation. Vol 20, Issue 9, pp. 804 – 817
  3. Wang RT, Nelson SF. What Can DuchenneConnect Teach Us About Treating Duchenne Muscular Dystrophy? Current opinion in neurology. 2015;28(5):535-541. doi:10.1097/WCO.0000000000000245.
  4. Scully MA, Cwik VA, Marshall BC, et al. Can outcomes in Duchenne muscular dystrophy be improved by public reporting of data? Neurology. 2013;80(6):583-589. doi:10.1212/WNL.0b013e318282334e.
  5. Kevin M.Flanigan. Duchenne and Becker Muscular Dystrophies. Neurologic Clinics. Volume 32, Issue 3, August 2014, Pages 671-688