Preparation and self-advocacy have made a difference for this columnist -by Amy Gietzen | October 12, 2022
Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment strategies vary from person to person, and scleroderma has no cure.
Because of this, every scleroderma patient has the unfortunate task of becoming their own self-advocate, which entails learning through lived experiences. Patients must learn how to keep up with treatments, manage symptoms, and cultivate resources, which include people I refer to as “reliables,” or those I trust, along with medical specialists and others in my support network. During the first few years after my diagnosis, I had an extremely difficult time finding the appropriate managed care, treatment combinations, and other resources to help me manage my symptoms. Where I live, in Buffalo, New York, treatment and care options were limited and weren’t as advanced as those in even bigger cities. I discovered early on that “scleroderma” was mostly an unknown word in my local medical community. It was like playing sports without a coach.
Not one to sit idly by as my health deteriorated, I mustered up the wherewithal to create a playbook of medical options and other available resources. The following is how I pursued a “W” after my diagnosis.