(April, 1999)

Reflections from a P-Mom with P-Kids
from Arlene

Ed: I have had psoriasis for over 50 years. That was really hard to write as I won't admit to being over 50. The last few days have been bad ones with not much to laugh about. Then I happened upon your site ... one probably only we who live with being spotted could appreciate. I laughed so much my husband thought I had finally lost what little I had left of my mind.

Finally, real people with a sense of humor who live with the same weird remarks, discomforts, etc.

I have two daughters and one son who also have psoriasis. Also one of my granddaughters has it on her scalp only (thank God). My daughters' P showed up after they had their first child, and my son's P, who is about your age, showed up when he was fourteen. So I guess you could say we are a family of flakes.

I really am grateful for this site knowing that someone else wears socks all the time, even in the yard. I imagine most of us have heard the things you list in your "Don't Say This" section. I once told an obnoxious teen, when I was a clerk at a grocery store, that the awful things on my hand he inquired about rather rudely were scars from punching smarta-- rude young men in the mouth. Not very ladylike, perhaps, but he was very polite from then on.

I am going to email this link to my daughter right now. I know they will enjoy this as much as I do. God Bless you for being there and doing this. -Arlene

... LATER E-MAIL ...

The largest P-problem I have had to deal with is 3 of my 5 children have inherited it from their otherwise perfect and wonderful mom. The pain of knowing what they have to deal with and to know my genes are the reason is something I haven't even shared with them—they don't feel sorry for themselves or as self conscious as I was and always have been. I suppose it's because they have lived with it as a part of mom for all their lives. I am thankful for that my girls wear shorts and short sleeve shirts, I have never been able to do that. My son also wears shorts in summer, and tank tops. He has severe psoriatic arthritis. I hurt for him so much. I give them understanding and support and they are neat, strong individuals. I am proud of them and the way they deal with lives' ups and downs. I have never given them pity, I have only tried to give them acceptance of the fact life is not always fair or perfect—but that is what makes it interesting. Try to laugh at things and find the humor. Crying only gives you a headache and makes your eyes red. I have always been grateful that I can walk, talk, see and hear. Being a flake cannot keep me from seeing a sunset, holding a baby, listening to good music—in short none of the wonderful gifts on this earth are kept from me because I happen to be a spotted person.

I have had this condition since age 5, so have had a lot of years to go through the many emotions. I know that self pity is a very self destructive thing. My mom was a very wise person in may ways and taught me to be thankful for what I had and could do, and to not spend time dwelling on what I was not able to do or have.

I realize as a parent myself what she must have felt while raising me and helping me to deal with the problems of a psoriatic child. Little girls wore dresses to school then. Most parents wouldn't let others play with me because they might catch "it." School nurses sent me home regularly to get Drs notes. My file must have had hundreds of such notes in it, but, I would still regularly be pulled from class and sent home. Go swimming with my cousins and brothers at the public pool? Forget it—even notes wouldn't get me in there. I learned to enjoy other things: walking in the woods, collecting rocks, reading.... I was also a very tough little girl. I took nothing from anyone and was a tomboy with a chip on her shoulder. Other kids may not have been allowed to play with me, but they learned really fast not to make fun of me.

Enough of that. What I really would like to know is how many flakes out there do you know have parents siblings or children who are also flakes? When I was expecting my first child I was told that my children would not have it, maybe their children or my brother might. Point being, it was believed P was not directly passed on [to the next generation]. WRONG—at least in my case. I would also like to know if ear and hearing problems are common among those who have it on and in their ears, my oldest daughter and I both have problems and have had to have growths removed more than one time from our ears.

I have been on most meds and had most of the treatments out there but will still keep looking for something that may help. Methotrexate helped the most. Tar-based products make mine worse. Did you know our spots glow under black light? I was in a club many moons ago, and the place was illuminated with black light during the music. I looked down and my spots were glowing on my hands. Heaven only knows what my face looked like! At least no one commented on it. I couldn't help but find it funny and just remarked that I didn't know I glowed in the dark. May as well laugh at myself first; that way the world laughs with me and not at me.

Well, I guess I have ranted on enough, at least got a few things off my mind and out of my system. If there is any way I can help any of you younger people or parents with children I would be more than happy to try. -Arlene

*****

Ed's Response: Arlene, just receiving your e-mails has already helped! Your description of your life with your children, and their lives now, is, in fact, a prescription and I hope all P-parents who read it, heed it—whether or not they are psoriatic themselves. I have always felt most sorry for parents of P-kids who aren't psoriatic themselves. They seem to feel the pain so much more acutely than even their children! I have always said—but never, until now, had a testament like yours to point to—that the presence of an adult psoriatic in the lives of P-kids could be and should be a blessing.

As you have P, three of your children have it, and one grandchild has it, I would be interested to know, from where do you think YOU got it? Do YOU have parents or grandparents who had P? Another interesting tidbit about which I am interested: Is there any PAIR of adult child-bearers in your lineage that BOTH had P? The reason this is becoming particularly interesting now is the supposition, which is gaining in popularity (I guess), that flakers have more than one gene acting in combination to make us flake. If this is true, I think it complicates the DOMINANT / RECESSIVE characteristics of old-fashion genetic logic. If it were a single gene, there's a 50/50 chance it will be DOMINANT in a child with one flaker-parent. If it takes some combination of genes to flake, the odds of all the genes in the combination being dominant in an offspring become more complicated. This might explain why so many flakers do NOT have P children ... and also make more logical why someone with no history of flaking in their family suddenly shows up a flaker. The old thinking—which you mention—about P skipping a generation is, I think, just that. Until I see some convincing evidence to the contrary, I will continue to believe that the likelihood of P-kids being born to a couple, one of whom has P, is luck-of-the-draw.

Your experience with the black light is fascinating in a macabre sort of way. I guess I haven't taken the opportunity to learn this for myself, but now I'm inclined to do so. I think next Halloween would be appropriate. I'll put a black light in my entryway, reprise a sleeveless T-shirt and pair of Bermuda shorts, forgo socks and shoes, and scare the bejeezus out of those wee tricks-or-treaters! Parents will think I spent a fortune on my costume! (What would make it perfect? If the black light makes my scalp glow beneath my hair!)

Arlene: Now that you've found us, and we've found you, do stay in touch. Your reflections on some of the situations shared here would be most appreciated! -Ed

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