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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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Ichthyosis and a typical day for me (Rachel)

Hi, I’m Rachel, and I have ichthyosis.

I’m lucky in that many of the people I meet on a daily basis don’t know it. There are other forms of ichthyosis which are a lot more severe than the type I have, and some of those symptoms make it very obvious to passers-by that there is something different going on. On the other hand, “my” form of ichthyosis is much more severe than the most common type, ichthyosis vulgaris.

I’ve had 37 years of experience figuring out how to take care of my skin, and if I stopped doing some of that maintenance, it would be pretty obvious pretty quickly that my skin is different.

Most people notice that my skin is different when they shake my hand. Handshaking is a bit uncomfortable for me because not only does it “out” me as having something different, in can also be really uncomfortable if someone has a boneshaking grip. My hands and feet are the most affected — most days you’d be able to notice that the palms of my hands are thick and rough, and, if I haven’t soaked or creamed them well enough (like at the end of the day), you’d probably notice a few fissures or cracks in my fingers. (And yeah, those hurt a bit, too.)

Besides that, if you look closely at my skin, you’d notice that it’s dry — very dry. In fact, some areas like my neck and ankles and the back of my knees look a bit scaly. Some people might notice a few white spots on my arms or legs — and those spots are VERY interesting to some researchers. Others might just notice that I’m a bit on the reddish side, even though I haven’t really been out in the sun recently. Others might notice me having trouble walking or opening things — or, more likely, using some adaptive equipment like jar openers. (We’ll write more about that later.) But really, I think all of those things are pretty subtle.

Here’s how my ichthyosis dictates a typical day for me.

Morning. I crawl out of bed after hitting the snooze button a couple of times and drag myself into the shower. I’ll spend the next 30-40 minutes in the shower, soaking up, exfoliating (scrubbing) and otherwise getting clean. Skipping a shower or even taking a short shower is simply not an option if I want to be presentable.  I get out and I slather on lotion. (More about that later, too.) I clean out my ears with a long plastic thingamabob (scaly skin + earwax buildup = yuck). (And my doing so is going against pretty much all official medical advice from ENT specialists.)

As I get dressed, there’s a bunch of more subtle details. The material of almost all of my clothes has been carefully selected to avoid catching on rough skin (hands, elbows, knees). I have orthotic inserts in some of my shoes, and I’ve also chosen some shoe styles to avoid putting pressure on certain (cracked) areas of my feet.

There’s a bottle of cream in my purse, a bottle in my car, a bottle in my desk at work. I’ll apply layers of cream two or three times during the day (and, despite this, could still have strangers remark on how dry my hands look or feel). I’ll open the plastic salad container with a pair of pliers, and the bottle of green tea with a jar opener designed for senior citizens with arthritis (yay adaptive equipment).

You might notice me drinking a lot of water throughout the day, or eating an awful lot at lunch. People with ichthyosis lose a lot more water through their skin, and need more calories. (More on that later, too.)

In winter, when things are at their most miserable for me skin-wise, I might wrap my feet in saran wrap. (It traps the moisture, which after an hour or so helps keep the cracks and fissures from hurting.)

Riding the Metro home, I see someone staring at my hands as we grab onto the silver pole in the train car. Is she checking out my nail polish or looking at something else? I can’t tell, and I don’t ask.

Home for dinner, cooking a meal is a flurry of using adaptive equipment and techniques to avoid getting raw meat in contact with open cracks on my hands. Or, when I’m in a lazy mood, just nuking something frozen.

And before I go to bed, some extra gunk to go in my eyes to control the itching overnight.

Having just written that out, it really doesn’t sound like much. Maybe I’m underselling the effect or some of the planning that goes through many aspects of my day. On the other hand, it’s taken me many, many years to figure out what’s worked for me and my skin. And perhaps that’s a roundabout way of getting to one of the reasons Jennifer and I started this blog — to explain that while ichthyosis does indeed affect many of my major life activities, and that while the daily routine can get crazy at times, it’s not the be-all and end-all of my life. I’m a lawyer; other people with ichthyosis have run triathlons or present on broadcast television. And by sharing our own story here, maybe we can help clear up some of the misinformation that’s out there and help other families dealing with ichthyosis figure out what works best.

Jennifer’s next entry about the kids’ routine may shed some light on some of the differences between my “I’m an adult and I know what I’m doing” routine and what we go through with the kids.

 

8 comments to Ichthyosis and a typical day for me (Rachel)

  • Roger

    Haven’t seen you in a long time. Have you tried putting on ointments from China? I was in this tour in China a long time ago and they were trying to sell an ointment/cream of some sort. The demo would have a girl literally grab a glowing/flaming hot chain with her bare hands while she screams in pain. And immediately, she would rub that ointment on her hand. And in just a few seconds, her hands are okay. No dryness, smooth and silky. Have you tried this?

  • rachel

    Hi, Roger. For a second I thought your comment there was blog spam. I’m really skeptical about stories like that, especially when they’re trying to sell things. We actually have some further blog posts in the works about the creams and other stuff we DO use. In our experience, there’s a lot of crap out there, from people selling fake “cures” and such. For us, some creams (Cetaphil, Aquaphor, etc.) work a lot better than some of the more expensive ones. Generally, it all varies by the type of ichthyosis and a bunch of other factors.

  • Jennifer

    Hi Rachel!
    I had always wondered about your hands and had noticed the glove you wore from time to time. I never wanted to pry, so I didn’t ask. Now, I can find out all I need to know. :)

    Also, just curious – I saw a show on TLC a while back called “The Boy Who’s Skin Fell Off.” Is this the same condition?

    Jen

  • rachel

    Hi, Jen! Thanks for visiting. Yes, the glove I wore when playing french horn helped me keep my hand flexible enough to use the valves. And actually, my post scheduled for Friday goes into a little more detail about that.

    The TLC program is about a boy with a condition called epidermolysis bullosa (EB), which is a different condition. Jennifer might be able to provide a better answer, but the simple answer is that ichthyosis generally involves skin that becomes too thick, while EB involves very fragile skin. Ichthyosis is a family of genetic disorders; EB is a different family of disorders involving different mutations. There are some broad similarities between some of the secondary symptoms.

    It can be very confusing! Especially since we talk about our own kids having “fragile” skin. It’s just not fragile in the same way as someone with EB.

  • jennifer

    Hi, Jen! EB is a very similar condition to ichthyosis. There are a series of genes that make skin called Keratins, labelled Keratin-1, 2, 3, etc. They all make enzymes and stuff that convert live skin underneath into the dead waxy layer on top. There are 5 layers of skin. Typically, ichthyosis (in particular, EI), is caused by problems with converting the very top layer of skin and making it waterproof. EB is generally a problem with the conversion of deeper layers of skin. So when ichthyotic skin falls off, it’s just like picking a scab most of the time. When EB skin falls off, it’s like flying out of a car at 40MPH, and in the really severe forms of EB, it’s not just the skin, but also the linings of the digestive system and lungs, too. Jonny in that program had a mid-level variety of EB.

    Stick around for further installments and I’ll go into it some more. Thanks for stopping by!

  • Shawn Doolittle

    Hello Rachel,

    I’m reading this months after you posted it but I was so touched I had to respond anyway. I have congential Ichthyosis (Lamellar) I believe, but I haven’t been to the dermatologist since I was a child. I’m 44 now and can relate to most everything you wrote. You would think having had a condition like we have, treating and dealing with it would be easy. For me, it is and will always be a daily struggle. I have never met anyone with ichthyosis and it was nice being able to relate to what you wrote. Especially regarding the shaking of hands…the thing I dread the most every single day.

    Maybe you could write me…sdoolittle@gefuels.com. I would love to be able to talk to someone who understands. (I’m a female by the way)

    Thanks for sharing Rachel!

    Shawn

  • Rachel

    Shawn, thanks so much for writing here. (Sorry I didn’t have a chance to respond until now.) The “haven’t been to a dermatologist since childhood” refrain is actually quite common. Hopefully, online places like our blog here, Facebook groups, and in-person meetings (such as the conferences sponsored by FIRST) will help affected people (like you and me) continue to connect.

  • John Schiltz

    Just came across this website . I have X-Linked Ichthyosis . I have been tried with all sorts of creams . I am just about to try Medline Remedy Skin Repair Cream , of which I have heard good reports . Have tried it on my arms and it feels and looks OK . won’t try it on my legs yet as I have had Cellulitis and daren’t risk it in case it sets the problem going again . Do any of you know a link between Ichthyosis and hand tremors? My right hand has started a tremor that sometimes makes writing and drawing difficult . I remember my Uncle’s hands shaking, he also had the Ichthyosis .

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