Living With Scleroderma Requires a Good Game Plan

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.
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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.
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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. 

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