Healthcare. There’s something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It’s obviously essential for the survival of people with rare and chronic diseases.
Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was passionate to craft an organization that really served the practical, every day needs of people with PD and their care partners. Now it’s her turn to be on the receiving end of much needed care and systemic change.
Sarah was diagnosed with Eosinophilic Granulomatosis with Polyangiitis (EGPA) – a rare form of Vasculitis. It took over a year for her to get the correct diagnosis. Anyone with a rare disease knows the heartbreaking and maddening pattern of being told different diagnoses over and over. Not to mention the patronizing platitudes that emanate from the overworked masses employed in the healthcare system. And then there is the never ending attempts to corral the disease.
If you’re reading this – you KNOW how it is.
ERDC is here to tell the truth. The truth about what it’s like to live with a rare, chronic illness and what it’s like to live and love someone with debilitating illnesses. And we’re here to listen and to try and help the best we can.
