Having psoriatic disease can sometimes make life challenging. That's when hearing what others like you do can help. Hear stories or tips about how they cope with psoriatic disease.
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“It doesn’t even hurt onnnnnnnne bit. I’m used to the shots now. When it comes time I just clean my own leg with wet cotton [alcohol swabs]. I get the shot and I pick out a Band-Aid! I love the princess Band-Aids. They are my favorite. I take the shots and now I have no more itchy circles. “
Leah T., age 5
Psoriatic arthritis has always been part of my identity. One of the first things I ever learned – never lie about who you truly are.
I was diagnosed with psoriatic arthritis by the time I was 2 years old, so I do not remember ever not having it. In elementary school, I was teased for something that I could not control and I used to wish, every day, for it to all go away. Kids would make fun of my nails and the psoriasis on my scalp, which they saw as “dandruff.” I was the brunt of a lot of hurtful jokes and I found myself sitting alone during most lunch periods.
I decided that, in the long run, lying would make everything worse. I could have easily continued to shy away from the crowd, but I decided to meet it head-on. From then on, if a kid were to ever ask me about what I have, I would tell them the complete truth, "I have psoriatic arthritis." If anyone were to make fun of it ever again, I would not deny their accusations. I would say, “Yes, that is what I have. If you will not accept that about me, then we cannot be friends.” Because I knew that above all, they were the ones with the true problems, not me. Often times, I would need to inform my teachers about what I have, as even they did not know what psoriatic arthritis is.
My message to kids who are walking in the same shoes as I am is pretty simple: Be proud of who you are, and be even prouder that your uniqueness is what makes you – You. Let people know that you are just fine in your own skin. Do not let others define you. Strength comes from inside you. Use it.
Shane W., 16
Find other parents who can help you
Having a child who has psoriasis means that one day you woke up and realized that you are a mom of a child that needs your help in a different way from what you’ve originally imagined motherhood would be like. You may suddenly be faced with the unexpected stress of dealing with additional challenges and stigmas. Whether or not you have experienced psoriasis yourself, watching your little one be faced with everything that comes alongside the diagnosis is a different ball game.
My one piece of advice is to find other parents who have experienced the same thing. They are out there, and they can be a bigger help than you may realize at first. Dealing with this in isolation may show your little one that it’s not OK to open up about what they are going through. I encourage you to become part of it all, and meet others that will complete your picture of what psoriasis could be – people joining together on common ground to make a difference in the future of your child.
Michel T., New Jersey
Watch for the first signs of Psoriatic Arthritis
Trips to the Detroit Zoo have been a long-standing tradition in our house. We’ve held membership privileges at the zoo since my son Andy was 2 years old. He’s just always loved nature, especially animals, and he’s a trivia buff when it comes to that subject.
Case in point: In the third grade, Andy was tested for an Individualized Education Program (IEP) based on his health. He couldn’t pass a brain test where he was asked to name as many animals as he could think of in 60 seconds. Why did he fail? He wanted to search his brain for just the right animals. Dogs and cats were just too generic. My kid chose: naked mole rat, red panda, leafy sea dragon, vampire bat, tapir, and aye-aye. The proctor did everything he could not to laugh.
But not everything that centered around the zoo brought a smile to our faces. When Andy was just 2 and a half, my husband and I took the boy on an outing to his favorite place on earth – the zoo.
As the day grew longer and Andy’s little legs started to tire, I picked him up and carried him on my shoulders. After about 10 minutes or so, I put him down to give my own back a break. Andy’s knees immediately buckled, and he dropped to the ground.
Tears streamed down his face as he screamed. These were not screams of a 2-year-old throwing a tantrum, but rather screams of our little boy in extreme pain.
I look back at photos from that time period and can clearly see a skinny child with swollen knees. With Andy’s easy-going personality and the fact that he never complained of pain directly, it’s easy to see why we overlooked what was right in front of us. At his young age, we weren’t looking for signs of psoriatic arthritis. After all, children don’t get arthritis, right? Wrong!
Kids do get arthritis. Kids do get psoriasis. And Andy is one of the lucky few with both.
Jaime M., Michigan
Telling people you have psoriasis can be difficult. A lot of people might look at your skin and become frightened by the plaques. I have plaque psoriasis, so when I was in elementary school I found myself trying to explain it to so many of my friends. In first grade, people would come up to me and ask if the “rashes” I had on my elbows were contagious.
In first grade, my parents had already explained to me that I had psoriasis and what it was. I had just assumed that other people would know about it, but it’s hard to explain an entire disease to people especially if you’re not an expert. The best thing to do is to remember that psoriasis isn’t a disease that every single person knows about, especially kids. The first thing I would say to my friends who asked about it is,
“No, it is not a rash, it’s a disease called psoriasis. It shows up on my skin and is not contagious. I was born with it and I’ve always had it and always will.”
These three sentences are all you have to say, but still it can be annoying when people are disgusted and confused by your physical appearance. I hated telling people about psoriasis when I was younger, so I wore long sleeves and pants a lot to cover the plaques on my legs and arms. However, I learned throughout my childhood not to try and hide it and to accept it. So now in high school I don’t care if people see my psoriasis, because I can just tell them those three sentences.
Alex F., 15
I have had psoriasis since I was 7 years old. It was tough to manage it because my parents helped me put on my medicine, but now I am able to do it myself. I was lucky enough to attend my first psoriasis walk in San Diego where I was able to meet other people with psoriasis. My family and I now regularly attend the event in San Francisco. My parents and I have also been able to visit the office of our local congresswoman, Anna Eshoo, and have been able to advocate and thank her for improving access to psoriasis issues and treatment. Now that I am getting older I hope that I can become a stronger advocate for people and issues with psoriasis.
Ana H., 15