Me and My Ichthyosis

Hello, my name is Jim Griffin; I am 68 years old, and I have ARCI-lamellar ichthyosis - a faulty transglutaminase-1 gene if you want to be specific.  I am an adult with ichthyosis. So...what's it like?  I bet I know the answer to that question, but I haven't thought much about it.  So, here goes.

Some of you may recall that I gave one of the keynote speeches at the 2006 FIRST National Conference in Atlanta, Georgia.  In that address I tried to describe what it was like to overheat.  Those of you with ichthyosis know what I was describing; the rest of you are at the mercy of your imagination.  I don't think we can tell you what it's like.  Physically, being an adult with ichthyosis is a lot like being a teenager with ichthyosis.  Each morning, after my bath brings me back to life, I sweep the scale from the bedroom and bathroom floor and dump it into a trash can. Then, once a month or so, when the can is full, I pour it into a plastic bag, tie it off, and throw it into the dumpster.  And sometimes I think how Dr. Mary Williams used to love to collect this stuff.   I don't look forward to the hot summer days when I can do little more than sit beneath a fan, and maybe read a John Grisham novel.  I've  gotten used to living in an integument that is too tight to be comfortable, but I still dread the cold days in winter when the skin just splits around the knuckles, between the fingers and toes and the edges of my feet.  The feeling of fabric catching on my skin whenever I handle clothing and the constant management of scale building up in the ear canals doesn't ever go away.  I guess the bad news is, it doesn't get better, but the good news is, surprisingly, it doesn't get worse either. It stays about the same, and you know how to deal with it.  It seems like it should get worse, doesn't it?  My skin is reproducing at least three times as fast as it should, so I effectively have skin that is over 200 years old in terms of reproductive cycles.  And yet, my skin still looks like it did when I was in my twenties.  My ectropion might be a little more inflamed, the cornea a little worse for wear with some pterygia growing there, but by and large, I'm eternal!

Psychologically, things change.  What's important, changes.  When you are young, you are made to know that you are different, and in a bad way. The evidence is everywhere.  "What's wrong with your kid?" (Your "kid" hears those questions even if directed to the parent.)  Have you ever witnessed the reaction of someone learning for the first time that the composition of household dust is mostly dead skin cells?  The teasing and snide remarks can be ignored, but the dropped jaw expressions of frightened children staring at you in the grocery store cannot be ignored or forgotten.   The arm yanked back from an aborted handshake, or the polite "no thank you" when you offer your help or ask to be a friend. These experiences confirm to you that you are abnormal. I can remember wanting to be normal.  At times, that's all I wanted; it was so important.  As I got older, it became less and less important.  I think I was about 30 when I realized, heck, nobody is normal; there's not a normal human being out there!  What gradually replaces the desire to be normal is the desire to be authentic - to be yourself.  It's the greatest gift we have; must we waste so much time wishing we were something else?

So, I'm an adult with ichthyosis, and it used to be so important to me to be understood - for someone else to know what it's like.  But I had a dog once, and he didn't care that I had ichthyosis - not one iota.  It just didn't matter. Then I met people for whom it just didn't matter.  I could love and be loved; I didn't have to be understood. So, what's it like to be an adult with ichthyosis?  Well, you don't have to be so wrapped up in it all.

I may not know what it's like to be you, but if you tell me that Halloween is not your favorite time of year, I know exactly what you mean.  If you tell me sometimes you just don't know if you can keep up, I know exactly how you feel.  Everyone knows what it's like to be bullied and teased; everyone hurts; everyone feels terribly alone at times, and we're all a little frightened of what is yet to come.  So, you wrap that knowledge up, and you make yourself a soul.  And you move forward, forever mystified by the bewildering wonderment of it all.  Gradually it starts making sense; when you've made enough history, there's room to look back and see the trajectory of your life.   And if you're like me, one day you'll nod your head in agreement with Soren Kierkegaard who said, "Life can only be understood backwards; but it must be lived forwards".

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.