Patient Story - Caitlin
Caitlin was always a busy nurse, so much so she struggled to make time for her own chronic diseases adrenoleukocytosis and aplastic anemia. She opens up about her own journey today so that others will learn the resources that are out there, and how to advocate for their own best care options.
“I was an Infusion patient in 2020, I had long wait times to even get scheduled, and my appt times were often bumped or not honored. I was there for hours, and could not use my phone or laptop to work. I felt like a number in a chair, and I decided there had to be better way for patients to access treatment, so I started an Infusion center with a fellow Nurse! I want to communicate with patients about their rights and that there are better ways to receive infusions. Most patients do not realize they have a right to choose where they receive treatments.” Caitlin
Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job "being sick" entails, can feel like too much at times, and it is a weight you shouldn't have to carry alone.
It is so important that patients with rare and chronic diseases are heard. Follow patient stories detailing life with lupus, multiple sclerosis, thyroiditis, Chron's, RA, and other chronic and rare diseases.
Are you an infusion patient that wants to help shed light on the chronic disease journey? Reach out to the Infusion Access Foundation team so we can hear your story and help you find the right pathway for you to be really heard.
Infusion Access Foundation (IAF) is a community of patients united to protect access to treatments that you get at a clinic, such as infusions and injections. We support each other across all diseases and advocate with one voice that reaches policy makers.
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