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Issue No 59 Fall 2022    

Ascertaining the Complex Nature of Dealing with a Terminal Illness of a Child with DMD and its Effects on Those Who Are Involved in Caregiving

By Adelina Balidemaj and Parmis Parsamanesh

Mentor: Dr. Mykhailo Vysochyn

  Duchenne Muscular Dystrophy (DMD) is the most common muscular dystrophy, which occurs almost exclusively in males. It is present from birth, and progresses fast, from weakness to losing the ability to walk, difficulty breathing, weakening of the heart muscle, and death.  Raising a child is tough enough, but there is a sense of fulfillment, and there are rewards. Caregiving a child with DMD brings physical and mental burdens: stress, frustration, despair, lower self-esteem, the feeling of guilt, disturbed family function, pain, impairs health-related quality of life and affects work as well. Caregivers often feel isolated, overwhelmed, and exhausted. Yet, those unique challenges are often not understood. SJSM students wanted to illuminate the heroic efforts of those people.      
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