Behind the Journey: Melani’s Story
When ESC was developing the Atopic Dermatitis Patient Journey, we wanted to be sure it reflected the voice and experiences of our community. Working closely with patients and caregivers, ESC conducted countless individual interviews, focus groups, as well as a national survey to gather information and understand the common challenges and barriers to care people living with AD experience throughout a lifetime.
We want to express our sincerest thanks to everyone who gave their time to tell us their stories, share their feedback, and help us with this important project. Over the course of the following year, ESC will profile some of the individuals who were involved in creation of the AD Patient Journey. Here is Melani’s story:
My eczema started when I was three months old. My mother tried to manage it, but nothing worked to clear it. My flares would come and go, but there was always a steady baseline itch. As I got older, it spread to more places on my body. I’ve experienced many flares and for years I felt my only choice was to ride them out.
When my eczema was unmanageable, it was a heavy burden and it was difficult to navigate through a regular routine. There were times when the pain was so bad that I would have to bandage up all my wounds, ice pack the cuts on my eyes, and just lay down all day. It was only until a new biologic treatment became available that I was able to find relief. However, I faced immense challenges getting insurance coverage given the drug’s high price and my institution’s limited knowledge on the severity of eczema. I was angry that I had to disclose how much I had been suffering and build a case for why I needed the medication. With support, I persevered and now find gratitude in how far I have come.
I became involved in creating the AD Patient Journey to show how complicated and diverse AD is, and how severe and debilitating AD can be.
Join us on social media by sharing your stories and experience using hashtags #MyEczemaJourney and #MyADJourney. It will help us highlight the challenges so many of us face and areas where we need to improve patient care.