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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Daily life with ichthyosis: Morning showers are a must

One of the most important parts of our day is the morning shower. For me, as an adult, NOT taking a shower in the morning simply isn’t an option, ever. I can go without a shower in the morning, but that would mean that I would have mobility and range-of-motion issues (above and beyond what I usually experience), I would feel itchy and uncomfortable throughout the day, and, most importantly for me, I would have some odor issues.

Skin buildup associated with severe forms of ichthyosis — like the kind I and the boys have — often carries with it a distinct odor which is quite different from normal perspiration. Here’s what FIRST says about the cause of the odor it in their “Teachers’ Guide” (long name, “Ichthyosis: A Guide for Teachers and School Personnel“)

Body odor resulting from normal accumulation of bacteria between and beneath scale (it is important to note that the child is not unclean and probably bathes more than the average child);

Anecdotally, we’ve noticed that among the various forms of severe ichthyosis, odor seems to be a bigger problem for those with epidermolytic ichthyosis (formerly known as bullous CIE or EHK). FIRST’s fact sheet on epidermolytic ichthyosis (unhelpfully) describes the odor as a “foul” odor which can be the result of chronic bacterial infections from “commonly found bacteria (Staphylococcus and Streptococcus)”.

Also anecdotally, we’re aware that some people question this commonly held assertion, that ichthoysis-related odor is caused by staph or strep. Typically, ichthyosis-related odor smells a lot different than body odor (from sweat, accumulating around armpits or feet). Some of our friends struggle with staph or strep skin infections, but others do not, and these others might sometimes describe their own ichthyosis-related odor as a more acidic or “tangy” odor (like vinegar), rather than the typical odors associated with staph or strep. My mom, a biochemist, always said I smelled like ketone bodies. Go figure. I bet an enterprising high school or college student could come up with some interesting experiments to do skin swabs and measure what grows, but I digress.

I, personally, can’t ever remember getting a skin infection as  an adult, and the boys haven’t had any, either. So in that regard we have been luckier than some of our friends with ichthyosis who struggle with chronic skin infections. But even without the infections, odor is an issue for us.

When I was growing up, my usual routine was that I would take a long bath in the evening. I’d wake up and would have to soak my hands in the sink for about half an hour, and also spend a lot of time soaping and scrubbing my face and antecubital (opposite elbow) area. That was quite a bit of time, and by early afternoon I would still be uncomfortably dry, itchy, not-entirely mobile from dry and cracked feet, and exuding enough odor for classmates to notice.

So as an adult, it’s a morning shower for me. I’ll hit the treadmill or do morning yard work without first taking a shower, and on some Saturday mornings will lazily lounge around for a few hours without one. But most days, I get straight out of bed and into the shower. And since my usual routine is to spend around 45 minutes in the shower, followed by time spent creaming, that has pretty significant implications for my schedule.

Sure, I could take a quick shower and derive some of the benefits. But quick showers, done without letting my skin fully hydrate and loosen up, mean that I’ll dry out before the end of the day. And not enough time spent exfoliating (scrubbing) means potential odor issues, or the buildup of scaly patches if I let it go for too long. Making matters worse, it’s a multiple-step routine. Soak first, then scrub, then soap.

Here’s an example. Last week on Thursday and Friday, I attended a big conference in Atlanta. Although the conference started on Wednesday night, for a lot of reasons, I had to stay in DC on Wednesday, and didn’t get in until 11:30 PM. Now, an early morning flight at 6 in the morning is a miserable experience for anyone, but for me, that meant getting up at 3:45 AM to shower. I felt rushed, partly because I was pretty darned tired, and so I barely made it out the door by 5 AM.

Bottom line, getting up at 3:45 AM meant that I barely made it onto the flight that left at 6:10 AM. Admittedly, procrastination and poor planning on my part meant that I packed my bag in a hurry in the morning, and I do live a half hour’s drive away from the airport.

One last thing: by 7pm, during the conference’s evening reception, my feet were totally killing me. Fourteen hours was just too much; my feet were dry and cracking and I was walking around with a visible limp. I had slapped on a layer of cream during the lunch break, but there just wasn’t an easy way to take the time during the day to hydrate or otherwise tend to my feet. So instead of joining colleagues for dinner I opted to return to my hotel room. And instead of taking a second shower, I just collapsed into bed.

I wouldn’t want our readers to think that I’m whining about how hard my life is. I consider myself very fortunate that I’ve figured out what works for me. And by now, I feel like I have a pretty decent appreciation for what my tolerances are for the bare-minimum amount of skin care I can get away with on any particular day. And that knowledge and appreciation makes things a lot different and easier for me than parents trying to figure out what will or will not work for their affected kids.

But I think one of the things that’s really easy for others to lose sight of is that there’s a constant drain on my schedule from the skin-care routine. An hour in the shower each day is 7 hours a week, which adds up to over 15 24-hour days a year. And that’s a lot of time.

Readers, how much is your own daily schedule impacted by your skin?

3 comments to Daily life with ichthyosis: Morning showers are a must

  • Vi

    I had a childhood friend who had this really bad, she was a pretty girl but she had painful itchy scales everyehwere except her face and palms. I noticed she had a strong odor now I see is due to the bacteria build up under the skin. I saw her when we wer adults and she had hers treated and it was barely noticeable.

    I always felt for her and played with her as a child even though some kids made fun of her. She was a strong girl and I hope she is well.

    WOW! what an umcomfortable looking conddition. I have chronic pain and I understand chronic conditions.

  • Jaz

    I admire those who live with such conditions and still get up and face their life head on!
    I knew a goof freind and she had this really severely, and she was always in pain from the scabs, itching and pain of the skill pulling off the new skin. She was a wonderful person and I felt pity at one point that later turned to admiration.

    Life is hard and we get some of these things, but life has a way of evening it all out for all of us in due time

  • mercy

    hi everyone, am a 28years old lady from Nigeria, and I have been living with this chronic skin disorder. the most painful aspect of this is that I have never seen or met anyone with this skin type ever in my life except from the internet or books I read. I don’t know if there could be a sort of awareness in my country to enable me live a meaningful life because people here are not aware of it and even the doctors here. thanks

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