It’s World Psoriasis Day today and I have to confess, I’m a little emotional. This year the National Psoriasis Foundation is focusing on childhood psoriasis awareness. Unfortunately we are all too familiar with childhood psoriasis in this house.
Our daughter, Kylie, is 5 years old. She was diagnosed with psoriasis when she was 4 yrs.
I will never forget the drive home from the pediatrician’s office after her diagnosis. I was devastated. It’s something I wasn’t prepared for, nor did I ever want to think was a possibility. Why my daughter?? My personal struggle with psoriasis is one thing… but my girls…??
One of my worst fears is the possibility of Kylie developing psoriatic arthritis one day. It’s something I constantly pray she never has to experience.
So how do you cope with childhood psoriasis?
For starters, look for possible food triggers. Over time, it became apparent to my husband and I that dairy would set Kylie’s psoriasis into a flare. She is now 100% dairy free. This simple change in her diet has made all the difference in the world.
If your child is old enough, think about putting a lotion bottle in the bathroom where they can reach it. Kylie is allowed to go and put lotion on whenever she feels like she needs it. We’ve taught her the right lotion amount to use and have explained the lotion bottle isn’t something to play with. She understands and so far this set-up has worked out well.
Use dye and scent free laundry detergent to wash all of your laundry items in.
Find the right soap that works for your child (your child’s pediatrician will be able to recommend something). We don’t use bar soap to bathe Kylie. I know from personal experience that bar soap drys my skin out and makes me itchy (it doesn’t matter what brand I use); we use an unscented body wash.
When your child is flaring, don’t let them wear their favorite fleece clothing. Fleece doesn’t always allow your skin to breath properly. Cotton is ideal.
Parents, be honest with your children. Tell them they have psoriasis and explain the disease to them the best you can. Children are capable of understanding much more than you think.
If your child is having problems coping with their disease, seek professional help. Your pediatrician should be able to give you different ideas and activities to help your child express themselves.
If you’re not happy with the advice or medical attention your pediatrician is providing, look for a new pediatrician. You will always be your child’s #1 advocate.
Kylie’s patches aren’t always in places visible to others, so we haven’t had to deal with children bullying or teasing her because her psoriasis ( I’m hoping we never have to deal with that). If you do suspect your child is being bullied, talk to them about it. If the teasing/bullying is happening at school, remember education is key. Most school-aged children have no idea what psoriasis is and probably think it’s contagious. Contact your child’s teacher to possibly arrange a time you can come in and speak to the class. If you aren’t comfortable in front of a classroom of students, there is a good possibility the school nurse may be able to assist.
Connect with other parents with children suffering from psoriasis. Trade information, ideas, vent to someone who truly understands what you’re going through with your child. It’s true that psoriasis can take an emotional tole on your child, but I think it’s also draining on the parent. Make sure you have an emotional support system. Keeping yourself emotionally healthy means you’ll be a better parent and take better care of your child.
Most importantly, love your children. No matter how flared their skin is, make sure you show them they are loved, tell them they are loved, and most importantly, teach your children how to love themselves. Beauty is in the eye of the beholder and God made all of us unique. Psoriasis patches don’t make us any less beautiful (although they do make us more itchy)! Tell your children what makes them beautiful. If they are told often enough, you will give them the confidence they need to be successful in life despite their disease.
For more information on childhood psoriasis, please visit the National Psoriasis Foundation’s website.
Wow Megan!! you are truly an inspiration! I love reading your thoughts and suggestions, you are knowledgeable beyond your yrs! I had no idea that your sweet girl had psoriasis, I a sorry to hear this after reading your struggles, but I also know that she will be strong and not let anything keep her down just like her mommy!!! You are an amazing mommy, wife, woman and friend!! Keep up the amazing work! and the girls are getting so big and what sweeties!!! Miss ya chica!
April, you are so sweet! I love and miss you, girl! xoxo
Kylie is fortunate to live at a time when psoriasis can be discussed openly. She is truly fortunate to have a mother who has a clear grasp of the issues and is proactive. Having lived with psoriasis and psoriatic arthritis for more than 40 years, starting at age 13, I suggest that people with psoriasis seek the assistance of a councilor. Psoriasis takes a toll on people's self-confidence and self-esteem in ways that are hard to detect and difficult to deal with once started. Of course you know this. You describe your own struggles very well. I hope someday to be able to articulate my experiences and emotions as well as you have in your blog. Thank you for the posting about World Psoriasis Day! Keep up the exceptional work. God bless you and Kylie.
Thank you, Grant. Your words touched my heart!