SJSCIENCE
SJSCIENCE – ISSUE 58, SUMMER 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
Adelina Balidemaj and Parmis Parsamanesh
Mentor: Dr. Mykhailo Vysochyn
Duchenne muscular dystrophy (DMD) is devastating muscular dystrophy, the most common hereditary neuromuscular disease worldwide. Patients, mostly boys, suffer from progressive weakness that advances to the inability to carry out activities of daily living and are complicated by cardiac, orthopedic, and respiratory problems, thus. Exon-skipping, stem cell replacement therapy, analog up-regulation, and gene editing are currently investigated treatment options, rising many questions that are still left unanswered. The burden DMD presents to caregivers is enormous and is associated with a substantial burden. – not only financial. Quality of life is impaired, sleep quality is poor, family function is reduced, mental health is challenged by depression, pain, stress, lower self-esteem… Caregiving impacts work life and productivity.
Still, there is not enough research done on the caregiver burden as it pertains directly to a child living with a terminal illness. SJSM students wanted to better understand the direct and indirect impacts DMD has on caregivers and patients.