Reggie Bryant and his daughter Bailey are living with eczema. They are encouraging other families to seek support and share their stories.
Could you tell us a bit about your family’s experience with eczema?
I grew up with eczema and have countless memories of scratching through sleepless nights, sitting in oatmeal baths, and being lathered in various creams and ointments, and the looming self-conscious fears that come along with peeling patches and having horrible dandruff.
When my daughter Bailey was diagnosed as a baby, those childhood memories came rushing back to me in contradictory waves. On one hand, I was experience-educated and determined to get her through her episodes. On the other hand, although my eczema is semi-controlled, I felt that it came from age and growing out of it, and not from establishing a working regimen. It created so many fears and uncertainties with prolonged feelings of helplessness.
It was really my wife Aisha’s commitment and passion that got us to where we are today. Her ability to think outside of the box, her aggressive research, and her ability to question the doctors and conventional medicine has allowed Bailey to have a better quality of life with very few flares.
We are very excited to share our story and this eczema roller coaster we’ve been riding. Bailey’s journey is a dermatological conquering of Mt. Everest, and we are certain that it will inspire other sufferers and caregivers to reach the summit.
You mentioned Bailey was diagnosed as a baby — what symptoms did she show that made you believe she also had eczema?
At 6 months old, Bailey started developing dry patches of itchy red rashes on her face, back, and chest. My wife and I would have to clip her nails constantly as she would scratch her face until it bled. As a baby, she didn’t realize what she was doing, but the scratching and bleeding would cause us to cover her in ointment and wrap her. Those approaches were only a temporary fix, and the patches would start to ooze and she would eventually get an infection that would land her in the hospital.
After a while, we were caught in this loop of scratching, wrapping, oozing, infection, and hospitalization. It was the apparent pattern that was the first clue that we were not dealing with a typical rash, and that there was an underlying issue.
Did growing up with eczema yourself help you care for Bailey’s eczema?
You would think that having grown up with eczema myself would have better prepared me for helping Bailey. That’s only partially true. I could sympathize with everything that she was experiencing, but I never really felt that the approaches my mother used when I was Bailey’s age, as well as the suggestions made by the doctors, actually worked.
I would scratch through the ointments and wraps, and would still find some relief when scratching; even when my nails were cut. At times, I would look at Bailey and she’d be wrapped on both arms, and legs, around her torso, and covered in ointment on her face and neck, and I would feel this overwhelming sense of fear and helplessness. I felt like a fighter facing an enemy that had already defeated me in the past, and not being any better prepared to face him.
It was the combination of the advances in medicine, and my wife and I attacking eczema on all fronts, that allowed us to control the flares and give Bailey some relief.
You mentioned Bailey is very involved in the decision-making of her treatment. Why is it important that children understand their conditions and get involved in their personal healthcare?
My wife and I felt like it was important for Bailey to involved in decision-making because it introduce her to the specifics of her condition, the options for treatment, and how it would affect her life. Involving children in their personal healthcare allows them to feel light they’re part of the fight. Most children want to have some semblance of ability and independence.
Speaking to Bailey and asking her opinions and feelings on the different decisions gave us the foundation to learn, explore, and grow, and to be able to present things to Bailey while knowing that she had a point of reference to effectively understand what the next steps would be.
What advice would you give to parents who are currently having challenges raising a child with eczema?
The advice I would give any parent having challenges with raising a child living with eczema is quite cliché: Whoever coined the phrase “time heals all wounds” had to be talking about eczema.
One thing I learned about the medication, the ointments, the shots, the steroids, the wraps, the bleach baths, the washing detergent, the bath soap, the food, the lotions, the weather, the environment … is that everything takes time. Finding the right combination takes time. Finding the right things to avoid takes time. Finding the right doctor takes time. Finding the right routine takes time.
It is a never-ending cycle of trying something and giving it time to see if it works. My advice is: give it time and give yourself time — the healing will come.
To learn more, visit nationaleczema.org