Dealing with psoriasis can be a challenging experience for both children and their parents. The Our Spot Welcome Kit is a valuable resource designed to help kids and parents understand and manage psoriasis and psoriatic arthritis more effectively. This comprehensive kit offers age-appropriate information, tools, and support to help families navigate the complexities of living with these conditions.
Understanding Psoriasis and Psoriatic Arthritis in Children
Why Does My Child Have Psoriasis?
The heredity factor seems to play a significant role in the development of psoriasis. About one-third of people with psoriasis can identify a relative, living or dead, with the condition. If one parent has psoriasis, there is a 15% chance that a child will develop the condition. If both parents have psoriasis, this increases to about 75%. However, if a child develops psoriasis and neither parent is affected, there is a 20% chance that a sibling will also get psoriasis. This is because the condition can skip generations, but a familial link to a relative through either or both parents is likely present.
What Triggers Psoriasis in Children?
Symptoms of psoriasis can be triggered by certain events, most frequently in children and teenagers, often after a throat infection due to streptococcal bacteria. This type of psoriasis is known as guttate psoriasis or raindrop psoriasis, named because it manifests itself over the body in the form of scaly, droplet-like shaped patches. Numerous small red scaly patches quickly develop over a wide area of skin, although the palms and the soles are usually not affected. Some people will go on to develop chronic plaque psoriasis later in life.
What Does Psoriasis in Babies Look Like?
Babies can develop psoriasis in the nappy area, causing a bright red, weeping rash or more typical psoriasis plaques. A child who has napkin psoriasis as a baby does not seem to have a higher risk of developing other forms of psoriasis later in life.
Our Spot Welcome Kit: What’s Included?
The Our Spot Welcome Kit is available in two versions, catering to the specific needs of kids aged 12 and under, and for teens up to age 18. Each kit contains a range of informative materials and useful items, including:
For Kids Ages 12 & Under
- Interactive booklet about being diagnosed with psoriasis
- Parent symptom tracker, pen, and journal
- Parent Guide
- Healthy living tips and a recipe to try at home
- Free copy of NPF Advance magazine (not included in modified kits)
- Our Spot drawstring bag (not included in modified kits)
- Our Spot sticker sheet (not included in modified kits)
For Teens (Up to Age 18)
- Booklet about managing and living with psoriasis and psoriatic arthritis
- Patient Navigation Center journal, pen, and symptom tracker insert
- Parent Guide
- Healthy living tips and a recipe to try at home
- Free copy of NPF Advance magazine (not included in modified kits)
- Our Spot drawstring bag (not included in modified kits)
- Our Spot sticker sheet (not included in modified kits)
In either kit, your child can choose between a 7″ plush leopard or an NPF phone pop socket (only available to U.S. residents and not included in modified kits sent outside the U.S.).
To request your complimentary Our Spot Welcome Kit, fill out the provided form on the National Psoriasis Foundation website. Please note that a complete Welcome Kit is only available to residents in the U.S. Due to shipping costs, a modified Welcome Kit will be sent to residents living outside the United States. Shipments may take 2 to 4 weeks to arrive.
The National Psoriasis Foundation and Our Spot Program
The National Psoriasis Foundation (NPF) has launched Our Spot, a program that provides resources for kids and teens living with psoriasis and psoriatic arthritis. The program includes a website and welcome kit, offering age-appropriate information and resources to help support the needs of youth living with psoriatic disease, their parents, and caregivers.
The goal of Our Spot is to improve health outcomes and quality of life for young people managing the physical and emotional aspects of living with psoriatic disease. Arming youth with information, resources, and examples of how others like them are living with psoriasis and psoriatic arthritis will help them better understand their diagnosis and foster a more positive outlook about managing their disease.
“Our Spot was developed specifically to address the unique needs of youth living with psoriatic disease,” said Jaime Lyn Moy, youth services committee chair and One to One volunteer, National Psoriasis Foundation. “Psoriatic disease can be overwhelming and isolating. We want to provide youth and their families a supportive environment where they can connect with others who know exactly what they are experiencing and learn ways to successfully manage their disease.”
Our Spot Website Features
The Our Spot website features stories from kids, teens, and parents about what it means to live with psoriatic disease. It also offers communication tips for both youth and parents in addressing different types of topics, such as talking with family and friends about psoriasis and psoriatic arthritis, addressing bullying, and navigating relationships.
Our Spot also offers educational materials to help students and school staff understand psoriasis and psoriatic arthritis. There is an opportunity for parents to connect with other parents raising a child with psoriatic disease through the NPF One to One program.
Our Spot Welcome Kits for Newly Diagnosed Youth
For the first time ever, a welcome kit for newly diagnosed youth is now available. Our Spot welcome kits offer age-appropriate materials for kids age 12 and under, and specific information for teens. Kits include materials about being diagnosed with psoriasis and psoriatic arthritis, a parents’ guide, recipes and snack tips, a symptom tracker journal, a one-year subscription to the NPF Psoriasis Advance magazine, and other items for kids and teens.
In an effort to reduce feelings of isolation that many youth with psoriatic disease experience, Our Spot aims to help youth and their families understand that they are not alone and others can help them navigate the challenges that come from living with psoriatic disease.
Supporting Your Child’s Emotional and Educational Needs
Psoriasis can affect both children and parents emotionally, influencing their social life, performance in school, leisure activities, confidence, and self-esteem. As a parent, you may feel guilty or unable to cope and may become frustrated that your child does not understand the importance of adhering to their treatment regimen. Supporting your child in managing their psoriasis is essential for their mental and emotional well-being.
Addressing Emotional Concerns
Many children, especially those who are young, will accept their skin problems as a matter of course, while others may feel embarrassed, upset, angry, stressed, or even depressed. Encourage your child to talk openly about their condition and not to hide it. Counselling can be helpful when people feel particularly low or in a crisis. Ask your doctor what services are available on the NHS. All are confidential, and some may offer their services without charge.
Ensuring Psoriasis Does Not Affect Your Child’s Education
There is no reason why your child’s education should be affected by psoriasis. However, a visit to the school with your child to ensure their teacher knows the essential facts about psoriasis might help. Take leaflets and fact sheets with you to leave behind. Make sure your child feels comfortable talking about psoriasis with you and the school so they will bring any problems to your attention. Ask the school how they will tackle any bullying issues if your child’s psoriasis is quite noticeable and devise avoidance tactics to pre-empt any possible situations occurring.
Encouraging a Healthy Lifestyle
A healthy diet is important for well-being and can reduce your child’s risk of many long-term illnesses. Encourage your child to maintain a healthy lifestyle by participating in sports and other activities they enjoy. Sunlight can help psoriasis, but sunburn must be avoided at all times. Ensure your child uses proper sun protection, such as sun cream and a hat, during warmer days.
How To Request Your Free Our Spot Welcome Kit
To request your free Our Spot Welcome Kit, you can visit the website of the National Psoriasis Foundation. On the website, you will find a form that needs to be filled out to receive the free kit. The kit is designed to help children with psoriasis and psoriatic arthritis learn about treatment options and receive support. The kit includes various items such as interactive booklets, journals, healthy living tips, and a recipe to try at home. There are two types of kits available for kids ages 12 and under and for teens up to age 18. Each child can choose between a plush leopard or an NPF phone pop socket. It is important to note that the kit is only available to U.S. residents and may take 2-4 weeks to arrive. The National Psoriasis Foundation is dedicated to helping people with psoriasis and psoriatic arthritis get the treatment they need while promoting research to find a cure for these conditions.
In Summary
The Our Spot Welcome Kit is an invaluable resource for children and parents affected by psoriasis and psoriatic arthritis. By providing age-appropriate information, tools, and support, families can better understand and manage these conditions. Remember, psoriasis is a common skin problem, and with proper management, you and your child can ensure that it is controlled. By working together, you can help your child cope with psoriasis and lead a fulfilling life.
