Mike Sayles knows the struggles of living with psoriatic disease. The 32-year-old in suburban Chicago has been living with psoriasis and psoriatic arthritis (PsA) for the past decade, with the signs first appearing and manifesting in his nails.
Mike has been through it all: the stumped doctors, the misdiagnosis, the long and arduous treatment journey before landing on something that works for him. The key to his success? Routine. Know what works, and stick with it.
The problem with routine, though, is that it can easily get thrown out the window when raising young children. Especially with young children who are also living with psoriatic disease.
“I noticed at a pretty young age that psoriasis and psoriatic arthritis started to present themselves [in my children],” says Mike. “In a period of about a year, all three were showing obvious signs of psoriasis on their skin and were experiencing some joint issues.”
Mike and his wife, Maggie, have had to find a new routine that works for their jobs, Mike’s psoriatic disease and their three children – Ava, who is 7, Keegan, who is 5, and Rori, who is 2. While only Ava and Keegan have been diagnosed so far, all three children already are living with the challenges of both psoriasis and PsA.
Getting into a rhythm that allows for treatment to be properly administered, while making sure the older two kids arrive at school on time, has been a challenge, to say the least.
“It’s just learning to be disciplined about things,” says Mike. “I have to stay on top of taking my medication daily. And for the kids, we have to make sure to apply their topical skin care every night. If we don’t stay on top of it, that’s how flare-ups happen. We also have to factor in their weekly injections into our busy schedules. Keeping on top of what you need to do for the psoriasis and the arthritis becomes a big part of your life.”
Being a parent of children with psoriatic disease can also bring some emotional challenges. While Mike’s youngest two children have not reached an age where their disease has affected them on an emotional level, Ava is starting to deal with the struggles of growing up with a visible skin condition.
“As Ava has gotten older, she’s getting more aware that her skin is different from those around her,” says Mike. “She’s got a big skin patch behind the knees, and this summer she was very sensitive to it and didn’t want to wear shorts.”
As his three kids get older, Mike knows that helping them build their confidence will be nearly as important as sticking to their treatment. All must be built into the family routine and followed. Regimen is key.
From a financial perspective, a household with four people living with psoriatic disease can create its own set of headaches. “Anytime you want to combine multiple types of medicine and treatment, it’s like an insurance nightmare,” says Mike.
Mike has had to build in time to his yearly schedule to work with both his insurance and the pharmaceutical companies for approvals for himself and his kids. He says it’s a bit of a journey every year but has been manageable, and he is ready for the hoops that must be jumped through.
Everything comes back to routine with the Sayles family. And it is this routine that’s helped them to thrive even during the worst pandemic of our lifetime. When asked about how COVID-19 has affected his family’s psoriatic disease, Mike was quick to point out that, thanks to the bedrock of routine and being on the right treatment, none of them have been adversely impacted. Sure, some of their doctor’s appointments might be done by computer now, but their psoriatic disease plan of attack has not changed.
The one thing that has changed due to the coronavirus is how the Sayles family interacts with the psoriatic disease community.
A few years ago, Mike was introduced to the National Psoriasis Foundation (NPF) by his dermatologist, who suggested Mike’s family take part in a Team NPF Walk in Chicago to meet others in the same shoes. “It was a great event to get outside with the kids in the park. It really helps them to see that there are other people who are going through similar things. It really helps them, especially my older daughter, to feel like they’re less on an island,” Mike says.
The family had a good time interacting with the NPF community and enjoyed giving back by raising funds for their walk. And they didn’t let the pandemic complications stop them from attending this year’s virtual Team NPF Walk in Chicago.
While the event took on a different feel, and the face-to-face interactions with the community were gone, Mike says the kids were just as motivated and excited to raise money and get moving outside for NPF. Their friends and family were just as eager to support them too. The family raised $1,300 for NPF, and they enjoyed riding together in the park on their scooters.
Mike says he and his family are grateful for the opportunity to connect and give back to a supportive community. Events like the Team NPF Walk in Chicago will continue to be a part of their routine for years to come.