Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one’s own advocate impacts the entire family on a daily basis. The literature has documented the impact of chronic illness on children and parents, making parents more susceptible to fatigue and stress. Further, misperceptions about mitochondrial disease may cloud the perception of healthcare providers, especially when symptoms are erratic or don’t make sense.
Patient advocate MaryBeth Hollinger RN MSN provides an overview of the literature, examines the implications of mitochondrial disease and medical child abuse accusations on the family, discusses red flags for families and healthcare providers and describes strategies to improve communication for all involved in the care of patients with complex medical conditions.Date: 12/13/2014