What is rare in rare? #2 MEPAN Foundation
Inherited Metabolic Disorders (IMDs) are rare, chronic, and complex diseases that necessitate continuous medical support from highly specialised multidisciplinary teams. Patients often require regular assessments and follow-up visits to different specialists, as well as ongoing therapies, to effectively sustain their health and enhance their quality of life.
The impact of living with an IMD extends far beyond physical health; it profoundly affects the psychological wellbeing and social interactions of both patients and their caregivers. Feelings of isolation, anxiety, and stress are common as they navigate the complexities of daily life and the healthcare system.
The 3-word response from our partner patient organisation MEPAN Foundation to the question “What is rare in rare?” was Rest. Satisfaction. Stability.
Taking care of loved ones takes countless hours, often in ways that others may not understand. There is no rest, and treatments are often unavailable. Finding satisfaction is difficult, challenges keep changing, and stability feels uncertain. On this ongoing journey, feeling that you are not alone can give you strength and hope.
