Psoriatic Disease is a Family Affair

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.

Virtual Community

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.