Many of us with psoriasis live and suffer in silence, especially during adolescence. Expecting a child to be able to explain their disease and be comfortable with it is a lot of pressure to place on a child, given he or she may not have clarification on it themselves. I remember lying about my disease and saying it was eczema because everyone knew what that was and I wouldn’t have to explain any further.
Growing up with psoriasis was a struggle. I felt like I was alone, or would ask, “why me?” During puberty, which was already hard enough, living with a visible disease like psoriasis made it 10 times harder. I suffered with psoriasis essentially my entire school career, only coming across one person who also had the disease and who I could relate to.
My guardians did what they thought was best to support me, but at the time there were limited resources to help me deal mentally with the disease. Luckily times have changed and there are more support for children who have diseases that specifically affect the skin. Here are 3 programs you must learn more about if you have children dealing with psoriasis:
The Children’s Skin Disease Foundation knows the importance of creating a place where those with chronic diseases of the skin can identify with one another. Camp Wonder was founded in 2001 by three doctors from the UCLA School of Medicine: Francesca Tenconi, Dr. Jenny Kim and Dr. Stefani Takahashi. Dr. Tenconi herself suffered from an autoimmune disease that affects the skin called Pemphigus Foliaceous. Through the journey of living with her own disease, she encountered many children who felt alone in their battle, and became inspired by them. She established the CSDF in 2000, with the camp to follow just a year later.
Camp Wonder is an amazing opportunity for a child with psoriasis. Children are able to freely be themselves while engaging in activities they may normally be afraid or too ashamed to do, such as swimming, crafts, rock climbing and much more. The camp even has a “prom” for the kids to enjoy. Camp is completely free for all children who are accepted. The ages who can attend are between 6-16 years old.
This year camp will run from June 20-26th. For more info or to sign up a child visit the CSDF website.
Camp Discovery was established over 20 years ago by the American Academy of Dermatology. The camp was designed for youth dealing with chronic illnesses that specifically affect the skin. Discovery is unique in that it offers 5 weeks of camp in 5 different places for a variety of age groups. Campgrounds include Camp Knutson in Crosslake, Minnesota (ages 10-14), Camp Victory in Millville, Pennsylvania (ages 8-13), as well as camps in Texas, Connecticut, and Washington State. No matter which camp you choose your child will encounter others living with skin conditions while participating in the activities they love. The best part is again, this camp is FREE! The AAD serves around 380 children per year through the camp initiative, and campers rage in age from 8 to 16. To learn more, volunteer, or to sign up a child click here.
NPF Youth Ambassador Program Sponsored by Leo Pharma
According to the National Psoriasis Foundation there are 700,000 people under 18 years old who are suffering with psoriasis in the United States, that makes up more than half of all reported psoriasis cases in the US. These numbers are startling. In response, the NPF has a Youth Ambassadors program which gives students the platform to take a stand for their disease as well as others living with psoriasis. The program is sponsored by Leo Pharma, and offers youth a $500 stipend and a chance to receive a $2500 scholarship.
So far there are about 18 youth ambassadors across the United States. The selection process is currently ongoing. Get more information by visiting the National Psoriasis Foundation site.