I am honored to serve on the National Psoriasis Foundation’s Youth Services Committee, not just because of the amazing staff and volunteers in this group, but also because of a signature project: Our Spot, a comprehensive website for youth and their families who live with psoriasis and psoriatic arthritis.
When my son was diagnosed with psoriasis at age 4 in 2003, all I wanted was information. I just couldn’t do enough research about the disease, treatments, and how to help my son. Even though the NPF had online message boards at the time, it was lacking a lot of information for children.
Over the years, NPF has evolved its resources for pediatric psoriatic disease, and every change has definitely been an improvement. However, Our Spot is quickly becoming the all-encompassing place for parents, teens, and kids to find stories, get tips, watch webcasts, and connect with others who know what it’s like to have psoriasis be at the center of their lives. Since this site is always evolving, check back often for new information and resources.
Oh, and while you’re there, don’t forget to request a welcome kit that has age-appropriate information for kids, parent information, recipes for healthy living, and a special gift for your child or teen.
A Site for All
Our Spot is broken out into three main sections with appropriate information for each audience in each category.
- For Parents: Learn how psoriatic disease impacts your child or teen emotionally and how you can help them with self-esteem, spot signs of bullying, and help them understand how to fit into the world when living with psoriasis and psoriatic arthritis.
- For Teens: Teens can test their IQs and take short psoriasis and psoriatic arthritis quizzes to distinguish fact from myth, learn how to have better relationships with friends and family, find help for dating, get tips to avoid being a target of bullies and how to deal with peer pressure. Our Spot even asks teens to email their “pselfies” to the NPF and show what they like best about themselves.
- For Kids: Learn about psoriasis and psoriatic arthritis in a way that’s easy to understand, identify emotions and find ways to deal with them, learn ways they can contribute to their treatment to help manage psoriatic disease, and how to talk to friends about their disease.
Stories from Young Patients and Parents
Even the youngest have something to say about psoriasis! From Leah’s take on shots at age 5, to Shane’s story about living with psoriatic arthritis at age 16 and how Alex at age 15 explains psoriasis to strangers using only three sentences… kids can meet other kids with psoriatic disease and know that they are not alone.
The same is true for parents. Michel shares why it is important for parents to open up about what they are going through so their child can do the same. And, oh yeah, my story is there, too, about first signs of psoriatic arthritis in my son.
Our Spot also provides a link to the NPF One to One program, a great resource where parents and caregivers can be paired up with parent volunteers who have been there and done that when navigating psoriatic disease. Parents can get treatment information (not medical advice), emotional support, resources, and more.
Your child and teen may spend more waking hours during the week at school than at home. It’s important to make sure your child’s teachers, school staff, and other students understand psoriatic disease. The Our Spot School Action Kit provides resources to help teachers and school personnel gain a better understanding of the disease and how to support the child in the school environment.
The kit includes a sample letter parents can write to teachers, disease, and FAQ fact sheets and a link to request a school PowerPoint presentation that NPF tailors specifically for kids ages 12 and under, teens, or school staff. Our Spot even has interactive activities on genetics.
Nutrition and Exercise to Stay Healthy
Throughout the site, visitors can get information about eating right to stay healthy. While some foods trigger a flare in psoriasis and psoriatic arthritis – and each patient is different – the tips provided are an overall guide to eating healthy and taking care of yourself, whether you have psoriatic disease or not, such as eating more fruits and vegetables, fun ways to be active, recipes, and online games to play to gain more information on eating right.
NPF provides many ways to meet other parents, kids, and families, all while furthering its mission of finding a cure and bettering the lives of those living with psoriatic disease. From volunteering at local events, giving a presentation to a school or organization, sharing stories or tips, or becoming an ambassador, there are many ways to get involved. Find what interests you and get started at psoriasis.org.