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Chapter Seven
"I used to complain..."
2008 Postscript: Children with Psoriasis

I was in Atlanta on business. My client noticed a flaming lesion on the back of my hand. “What's that?” he asked. I told him I had psoriasis. He was suddenly keenly inter­ested. How long had I had it? How extensive was it? What doctor did I go to? What treatments had I tried? After a minute or so of this staccato inquiry I asked, “Why are you asking? Do you have psoriasis?”

Avoiding the question, he offered to take me to lunch. To my surprise, he took us to his apartment. His wife was at work; his nine year old daughter was at school. We made sandwiches that we ate in the kitchen, then he said, “Come with me, I want to show you something.”

He led me to his daughter's room. A suspiciously neat little girl's room with stuffed animals on the made bed, a doll house in the corner, flakes all over the carpet.

“Your daughter has psoriasis?” I asked.

“In extreme,” he said. “We vacuum this room every evening. This is how it looks by the time she leaves for school the next morning.”

I had never come in contact with a child who has psoriasis. Still haven't, really, but this proximity to the reality of it stunned me. I had read about children with psoriasis in the NPF Bulletin. My client said his daughter showed symptoms of psoriasis within a month of her birth and had been diagnosed psoriatic shortly thereafter. “She goes for ultraviolet light treatments and tar baths twice a week,” my client said. “In between we use the steroid creams.”

I asked what their doctor thought about systemic treatments and he said until she was older the doctors were reluctant to recommend this course.

“How does she handle it?” I asked my client.

He said, “It’s funny, Ed. I think it’s harder on her mother and me than it is on her. She's in a private school that caters to kids with physical problems. Loren is a bright girl, top of her class. Her teachers tell us she's very maternal towards her classmates. The other night she told me she wanted a personal computer with a modem so she could go on line and ‘chat’ with her friends after school. I asked her why she simply couldn't call them up on the phone. She dismissed that as old fashioned.”

“Does she have any friends with psoriasis?” I asked.

“None at the school that I know of. She's made a couple of acquaintances at the clinic, but they live in other parts of town and there's been no socializing. Do you think that's important?”

His question was very sincere and I could only shrug. My psoriasis did not manifest until I was nearly forty. For all practical purposes, I'd already lived a “normal” lifetime in shorts and sleeveless shirts. My vitiligo made me “different” but not “repulsive.” Though depressing as hell, it was easy for me, at the age of forty, to just say “those sleeveless days are over. Now it’s long sleeve shirts, khaki pants and a broad‑ brimmed hat on the beach for me.”

On the plane back home to Kentucky I could not concentrate on my work, only on Loren's room and imaginings of Loren herself. Little Loren hasn't met me, yet she's humbled me. She's made me understand how very, really, lucky I am.


Ed’s Postscript (3/15/2008): When she was eleven or twelve, my oldest granddaughter developed what I thought might be a psoriasis lesion on her scalp. I took her to my PA (physician’s assistant) at my dermatologist’s office. The PA prescribed some mild topical and said, “It will probably go away and stay away, in which case it probably isn’t psoriasis. If it comes back within a month, we’ll start treating it as if it is.”

Alexandria’s “itchy spot” did go away and stay away, and I breathed deeply and with gratitude.  There are six more grandchildren after her — the youngest just turned five — and so far there have been no other “close encounters.”

As dastardly as psoriasis is to live with, I think it is most difficult when the condition belongs to your child and not to you.

There are many email exchanges in the FlakeHQ Archives that talk about “P-kids,” and many of them are emotional. My favorite is one from Laura B. posted in 2001. I encourage all P-kid parents to read it in its entirety, but here are a few lines that stand out:

Yes, in a way I have psoriasis too.  I am the one who has bathed him, put the creams and goops and medicine on, and I have been the one to take him to the doctor.  I have gone to his school and talked about it to the students and even educated the school nurse about it. I have watched him scratch until he bled and then I have soothed him for hours on end during the night so he won’t scratch more. I have watched and had my heart break when people have stared at him and been cruel to him.  I have cleaned up the flakes, the blood and the stains.  I have heard him cry at night when he thinks no one can hear.  I have cried at night when I think no one is listening. He has told me that he hates me for causing this to happen.  Yes, I have even blamed myself for his condition and sadness.  I have also wished that I could take it away from him and put it on myself so he doesn’t have to suffer.

However, now when I look back on his life, I wouldn’t change a thing. If he didn’t have psoriasis a lot of different things would not have happened.  I don’t think I’d have the special closeness that I have with him.  I know when he hurts and he doesn’t have to say a word. I have a special bond with him that only his P could have created.  I love to feel his skin — plaques and all — next to mine because I know that it is him.  Most people would say that I feel this way because I am his mother.  I say that I feel this way because he is my son. God saw that I needed him, psoriasis and all, and gave him to me.

What we have gone through is nothing compared to what we have learned. I have a seven year old who is compassionate about the feelings of others, who knows and understands how cruel it is to tease and who stands up for people who are being treated poorly.  I look at him and wonder if I will ever be as strong.  He has taught me so much.  I don’t look at others and judge them anymore.  I look and try to see what a person’s heart is worth not what their appearance is like. I was always told that growing up but I don’t know if I even really understood it or even practiced it.  I know now that a person’s skin may be their largest organ, but their heart, mind and soul are of more value.  After all, a person’s skin always falls off in the end.

Laura B., Lessons Learned by a P-Kid Mom,, July 2001

Contents of Flake: Confessions...
©2008 Ed Dewke