MitoAction welcomes psychologist Carole Slipowitz PhD and Tufts Metabolism clinic nurse coordinator Maggie Orr RN M.Ed to discuss the challenges of dealing with a diagnosis of mitochondrial disease.
How do you cope with the unpredictable, invisible disease?
Any chronic illness can be overwhelming - for a child, a family, or an adult with the condition. However, due to the unpredictability, complexity of symptoms, and uncertain prognosis, a diagnosis of mitochondrial disease is especially stressful...and exhausting.
Maggie Orr is the nurse coordinator at the Tufts Medical Center Floating Hospital for Children in Boston; she has 10 years of prior experience with mitochondrial disease patients. Carole Slipowitz has over 20 years of experience as a psychologist; for the past 2 years she has served as a consultant to MitoAction's Mito 411 support line.
When you have a child with a rare disease, who sees so many different doctors, it can feel challenging to know how your pediatrician...
MitoAction Interview with Jamie Emory
Siblings of children with disabilities play important roles in their families, and often experience similar concerns and opportunities as parents. This session will present...