Reaching Out

She knows it could have been worse. Her sister, also diagnosed with psoriasis, had nearly all of her body covered in lesions and developed psoriatic arthritis as well. While Michel was using topicals and receiving phototherapy to treat her psoriasis lesions, her sister was taking oral systemic treatments. It was only after the sisters were diagnosed that they found out about their family history of psoriasis – their dad had experienced bad flares during his college years.

While Michel received plenty of cruel comments from classmates in her teenage years, she did not expect to receive similar comments as a new mom struggling to get a diagnosis for her daughter. “People would come up to me and say, ‘What did you do to your baby?’” says Michel. “They’d say, ‘You really should get your child to a doctor. Do you see their face?’ And I’m like, ‘Yes, of course, she is under the care of a pediatrician.’”

Once Leah received the official psoriasis diagnosis, Michel tried several different therapies, including phototherapy. “If I held it closer than 2 inches by accident, she would blister, she would have burns, [she would] bleed,” says Michel. “If I held it too far away, it wouldn’t help at all. It would burn the skin around her [lesions].”

Nothing seemed to work. “She was covered. She wasn’t sleeping. She wouldn’t bathe. She’d bleed. She’d cry all night,” says Michel.

“I remember just driving up and down the highway because she wouldn’t sleep, and I didn’t know what to do or where to turn. And then that’s when I reached out to the [Psoriasis] One to One mentorship program.”

In 2016, the National Psoriasis Foundation (NPF) launched the Psoriasis One to One program, connecting people with mentors who have lived with psoriatic disease or cared for someone with it. Mentors are there to help others find health care providers, discuss treatment options, or even just listen. Michel was quickly connected with Jaime Lynn Moy, who managed her son’s diagnosis of psoriasis as a child and knew how helpless it can make someone feel as a parent.

“It’s like, put your own oxygen mask on first. I needed to find a way to help myself to be able to help her, so that’s what I did,” says Michel. Once she was paired up with her mentor, she was better able to care for herself and Leah. “It was just the fact that [Jaime] was there. Other people are going through this. And it kind of gave me this energy boost,” she says.

Eventually, at around 2 and a half years old, Leah was given a biologic treatment. “I will tell you, at 16 weeks [of treatment] she was 100% clear,” says Michel.

Leah’s experience was even written up in a scientific paper as the youngest patient to receive this biologic in the United States. Michel says the paper has helped other families petition their health insurance to receive the same treatment for their children.

Leah’s success while being given the biologic was such a turnaround that Michel started to rethink her own treatment. “I still had [psoriasis] on my body, and it was still annoying and bothersome. I thought, maybe I can take that treatment too,” says Michel. “I said, ‘My daughter’s very successful on this. I feel that I could be a good candidate for this.’ I was my own advocate.”

Today Leah is 10 years old, and both she and her mom are being given the same biologic treatment and are fully clear of lesions. Michel has also become a mentor with the Psoriasis One to One program, helping others who are going through similar difficulties.

“Knowing how desperate I was when I reached out to my mentor, for me to be able to help kind of gives back,” says Michel. “It allows me to give back because I was in their shoes. I understand how the parents feel when their child is up all night covered in psoriasis.

“Giving back, whether it’s giving your time or giving your money, it helps you have a ripple effect,” she adds. “If you do something good for someone, they’ll do something good for you. You never know whose life you’re touching, who really needs it in the moment.”

Photos by Jodi Crandell