(February, 1999)

Heredity, Misdiagnosis and ... Lying Mother?
from Kristine W.

Hi all. I also have psoriasis but have never been diagnosed as such. My story is brief and I'll try to keep it to the point.

My father has had P for as long as I can remember, usually on the head, elbows and knees. I never really wondered what those red patches were because it was just Dad. Then the arthritis started. He was medically discharged from the National Guard and began traveling to more temperate climates during the winter months. He has been doing that now for 10+ years and is doing okay. Yes, he's had all the treatments and all the pills but he just sets his own pace and does great. (He does lots of volunteer work while he is traveling.)

Anyway, what does that have to do with me? I have always taken after my father in health matters. We get sick the same way, we never throw up, we both get cold sores, etc. Well, apparently I take after him with psoriasis as well. I first noticed it in first and second grade when playing on those swings with the canvas seats that fit around your thighs. My thighs hurt every day after school and I couldn't figure out why. The backs of both legs were red and rough. I stopped wearing jeans and then stopped swinging altogether. It didn't go away. I am turning 30 this month and still have rough scaly patches on the backs of my thighs. If I keep some alpha-hydroxy formulas on them, they don't itch as much.

The head is another story. Mom said that I was born with a patch on my head. Can that be true? Either way, I have had tar shampoos for my entire life. It changes position and migrates around my head sometimes, but is always there. Sometimes in more than a few spots.

I am resigned to the fact that I will never be able to wear head bands or anything that shows the hairline much. That's not too bad. What I do hate is the waiting every winter to see which new spot is going to pop up. I first noticed it happen on the top of my shoulders. Fine, covered, I can live with it. Then it was on my temples at the hairline and face "boundary." Difficult to handle, but okay. The ears were the next winter's surprise and those hurt! They still bother me and it has never gone away once! Last year was the ultimate. It popped up on both my eyelids. I don't think I wore my contacts or makeup once last winter. Thank God for glasses sometimes. Luckily, that went away once I got into the spring sun. I am now waiting for the next installment.

Overall I believe I have a very mild case compared to most others. The only real hassle I have is when it occurs on my face and the constant brushing of my shoulders by my husband. I am very thankful for my blessings.

What I am concerned about is my ability to handle the arthritis that will most likely start soon. I don't really doubt that I will get that, but I am concerned because I have never been diagnosed as having psoriasis. The last doctor told me it was a fungus!! Yeah, I've had a fungus my WHOLE LIFE!

So can doctors diagnose the arthritis accurately without a formal history of P once they rule out rheumatoid?

Question #2: What about my children? I already may be a carrier for color-blindness. Does psoriasis also have hereditary linkage? Poor kids!

Question#3: Has anyone ever heard of possible fertility complications because of this disorder? Just checking cause that is another thing we're trying to figure out. (We both test fine, by the way.)

Thank you for this site. I never before realized that there were so many others dealing with this. It makes me so thankful for the mildness of the case I do have. I am no longer as ashamed. In fact, I told my husband about your escapade on the plane and project "green screen" and he really enjoyed that. I think he no longer thinks I am a freak either. Thanks. -Kristine W.

*****

Ed's Response: Howdy Kristine! I love a person that walks up to the concession and knows exactly what they want ... none of this "Oh, Geez! Whadda-I-want? Duh-h-h-h" stuff. So, let's start delivering!

Your first question (though you didn't number it) had to do with whether or not your Mom is a liar. We can't answer that in any grandiose way (but I have difficulty believing a lying mom could raise such an articulate and thoughtful daughter). I have heard of newborns with lesions, so you could have been born with a patch on your head. Even if you weren't, let's not blame it on Mom's predisposition to be fictive. Let's just assume she was groggy at the time.

The question you must have considered number 1 was about whether docs can diagnose psoriatic arthritis. I quoted NPF's info on that in response to Lydia (see "P-Arthritis, PUVA & Skin Cancer" in this month's mail). My derm has accepted the fact that I probably have PA in my right knee—something unpleasant definitely dwells there—but wants me to see an orthopedist, too. So far, I've not felt poorly enough to follow through.

Your second question was about whether or not you are likely to spawn MORE FLAKERS. (This question is tightly related to question number 3, so let's go there, first.)

Your third question was whether or not flaking is related to fertility complications. Nothing I've read implies a biological connection. (Wouldn't we have died out by now if flaking is hereditary but flakers can't begat flakers?) However, ask your doc about some of the systemics you have / are / will be taking to palliate the condition. Some of the systemics are no-nos for people who want to breed. (Read this month's letters about Tegison.) Also read in this month's mail, "Can PUVA Cause Sterility?" My research is definitely not complete, so let me ask other readers who know or believe anything about the P/fertility relationship to e-mail me.

Back to your second question—are the kids doomed? Well, everybody that looks at the data (or reads opinions from those who look at the data) seems to believe there is a strong hereditary tendency. You and your Dad are a case in point. Thing is, it doesn't—at this time, at least—seem to be a simple genetic formula. We now believe two groups of things have to be in place for P to manifest: One, you must have the genetic proclivity; two, that proclivity has to be triggered. Could be many more millions of people are walking around with P-code in their genes (the proclivity) but not manifesting because they've never been triggered. This would explain why some people get P who DON'T have a history of it in their families—none of their remembered relatives ever triggered, but probably had the proclivity. The triggers may be a combination of heredity and environment. You had a pretty well-cocked trigger if you were manifesting at birth. I, on the other hand, had a rusted-shut trigger until I was 39 years old. What finally made my P fire? I'll probably never know, but it makes a more interesting story to blame it on my first wife, whom I'd been married to for 19 years before I started to flame.

Other mentions in your letter.... The doc who blamed it all on fungus. GET REAL! Where did he come from, a Cracker Jacks box? Call NPF (www.psoriasis.org) and get a referral to a P-savvy derm in your area. Maybe you DON'T have psoriasis ... but it sure sounds like you do.

I empathize sincerely with your "face boundary" problems. Back in ‘91 or ‘92 I had it pretty bad on my face, too. Men get off easier, though. (1) We can grow beards. (2) We don't irritate our facial skin with cosmetics and beauty treatments (at least, me and the other men I know don't). (3) We can find a way to wear our hair that hides the crusties and then stick with it. (We really don't give a damn about making fashion statements with our ‘dos. At least, me and the other men I know don't.) ...... You know, it just occurred to me. I could really be a pretty ugly S.O.B., couldn't I?

Now that you've found us, Kristine, keep visiting. I hope we'll hear more about the P/sterility relationship (or, hopefully, lack thereof). And one thing's for certain: As long as you hang with us, your P isn't going to make you stand out like a freak. On the other hand, that accusatory attitude about your Mom's reportorial integrity is going to raise some eyebrows. ;-) -Ed

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