In many ways, Isaiah Dixon is your typical 17-year-old. He loves to play the drums, hang out with friends and is preparing for more independence as he looks forward to heading to college.
But, living with severe atopic dermatitis (AD), a chronic form of eczema, makes this transition more challenging for Isaiah, as he will be tasked with taking on a greater role in the day-to-day management of his disease, on top of navigating the transition to adulthood.
Since Isaiah was diagnosed at age 2, his parents, Lori and Reggie, have helped him manage his severe AD. They’ve been there at every step, providing daily reminders and caring for him through every debilitating flare-up and hospitalization. Now, as Isaiah is getting older, his parents know they have to take a step back and let him learn to manage his disease more independently.
To help with the transition, a group of experts called the Understand AD Squad — comprising a dermatologist, psychotherapist and peer who also has AD — visited Isaiah and his family and shared helpful perspectives.
“I’m still Isaiah’s mother so I will always have a level of concern for him,” Lori said. “Helping him prepare to manage his disease more independently now helps to put my mind at ease.”
Understand AD Squad dermatologist, Dr. Mercedes E. Gonzalez, said it’s important for teens to start taking on more responsibilities while living at home, and has some tips to share with caregivers:
1. Find an eczema specialist
A dermatologist focused on treating moderate-to-severe AD is an integral part of your teen’s care. If your teen is going away to college, decide together if they should keep their dermatologist near home or find a different one near school.
Work with your teen to identify the right doctor for them. If someone isn’t the right fit, that’s OK. “Don’t be afraid to change the game plan at any point,” Gonzalez said. “And always have your next dermatologist appointment scheduled.”
2. Coach them through doctor’s appointments
As the caregiver, you’ve been advocating for your child at every doctor’s appointment, likely for most of their life. But as they transition to adulthood, you may not always be in the exam room. One of the most important things to teach your teen about dermatologist appointments is to be open and ask questions.
“I always tell my patients to keep track of things that are bothering them or things that aren’t working for them, so that when it comes time for our next appointment, they are ready to talk,” Gonzalez said.
You can download helpful resources, including a doctor discussion guide, to prepare for your next visit.
3. Explain the administrative processes
Talking with a dermatologist is one thing. Navigating the sometimes-complicated appointment and insurance process is another. Explain how your insurance process works, and write a list of important information about your insurance and coverage to give to your teen. Then let them practice taking control and managing the full process at their next doctor visit.
4. Take a step back
You’ve given your child the tools they need to go confidently into adulthood. It’s time to take a step back and let them start taking control of their AD on their own.
“Transitions like this can be difficult,” said Gonzalez. “I like to remind teens and their caregivers to stay positive and make sure they have the right squad in their corner. With the right tools and the right partners, I think that it does get easier to manage moderate-to-severe AD.”
Visit www.UnderstandAD.com to see the video series of Isaiah’s experience with the squad, learn more about moderate-to-severe AD, and download more tips and resources.