It's been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.
Published On: May 20, 2019
Last Updated On: Aug 25, 2020
“If I hadn’t found NEA, I probably wouldn’t be working at the same job. I couldn’t have handled it. I would have had to quit my job to take care of my son.”
Sarah Pry breaks down in tears talking about her son Aiden’s struggle with atopic dermatitis. The hardest times she and her son experienced were during the school year of 2017 – 2018.
Aiden had just turned 9 years old when his eczema got so bad it kept him from eating and sleeping. The discomfort he felt prevented him from walking normally, and he stopped wanting to move much at all.
When his AD was at its worst, Aiden spent most of his days at home lying in a towel. The lack of movement caused swelling to develop in his legs. He contracted staph infections, ended up in the hospital and was on antibiotics for over two months to manage the infection. Aiden missed almost half the school year.
Sarah saw her son’s mental health deteriorate as he became more isolated and depressed. She reduced her hours at work from full to part-time to stay home and care for him. Sarah felt guilty that she hadn’t taken time off work sooner.
She shared, “I didn’t quite understand what was happening to him. I started looking on the web for any solution I could find to help him.”
Her web research paid off when Sarah discovered NEA—and just in time to apply for a scholarship that helped her and Aiden attend Eczema Expo ’18 in Chicago last July.
“Going to Expo was life changing and a godsend. I learned so much. NEA gave me a different level of understanding about what I needed to do for my son,” she said.
Sarah had the chance to hear directly from world-renowned eczema experts at Expo, and she immediately put her knowledge to use caring for Aiden. Now, she uses bleach baths that soothe Aiden’s flare-ups, antibiotic ointments to help prevent staph infection and video games to keep him distracted so he doesn’t scratch as much.
What Sarah learned also gave her the confidence to find a new doctor with a more up-to-date approach to treating Aiden’s AD.
“Before I went to Expo, I had no idea of all the eczema research that was out there. I found another doctor that knew more about new solutions. I gave that old doctor the boot.”
Aiden attended Expo Kids Camp and developed special friendships unlike any he had back home. He hasn’t sunk back into depression since they went to Expo because he now knows there are other children out there with eczema just like him.
His mother is happy to see him happy. Sarah says Aiden loves to pick on his sisters, crack jokes, do tricks on his bike and read about football. She’s relieved that this year he hasn’t missed any school or had to be hospitalized because of eczema. Sarah has been able to go back to work full time and even got a promotion.
Sarah and Aiden are excited to go back to Eczema Expo in July. They’ve received scholarship funding from NEA again this year, and also they’re putting on a big yard sale to raise funds themselves.