There is so much more to him
by Glenda Charlene R.
St. Joseph, Michigan

Logan is 7 years old and has just finished first grade.  He is the oldest of four children. His siblings are 4, 3, and 1 years old.

He loves to read, and listen to, funny stories and jokes, and really enjoys comic books. He looks forward to going to water parks, and swimming at our beautiful beach on Lake Michigan every summer. He plays soccer and T-ball. Halloween and Christmas are his favorite holidays, and PBJ’s are his favorite food.  His birthday is Christmas Eve, and he wouldn't change it (so far, anyway…)   Logan has a gift for helping little kids and babies feel safe and secure, and he is very protective of his new baby sister (now one year old). Oh, and he has ichthyosis! He is affected with CIE, and is the only one with ichthyosis in our family.

What is Logan’s treatment routine? What types of lotions/creams do you use?

Typically, Logan has two treatments each day.  Everything we use is over-the-counter. First, we apply Curel® Intensive Ultra-Healing lotion (red label) from head to toe, followed by Aquaphor® Healing Ointment. We do this every morning and night, as well as after a bath, shower, or time spent swimming.  When his skin is really dry or peeling, we’ll do an additional treatment after school (so three times daily).  When he begins peeling (about every 7-10 days or so) we apply an exfoliant, AmLactin® lotion, before bed to speed up the removal of the old skin. The goal is to keep his skin moisturized, seal that moisture in, and exfoliate the old skin.  These are all things that our amazing largest organ, our skin, is able to do on its own when it is functioning normally.  Ichthyosis has helped our family to appreciate, and even marvel, at the incredibly complex functions of the human body.

Approximately every 4 months, he needs to go to the Ear, Nose & Throat doctor to have his ears cleaned out.  He often has more than 90% blockage in both ears, but the doctor explains that he can still hear surprisingly well.   At each visit, the ENT pulls out a long, narrow plug from each ear made up of dead skin and wax.  (Sounds like something out of one of those Gross Anatomy exhibits at kids’ museums, huh?!)   It’s pretty fascinating to watch, though!

As a parent what concerns do you have for Logan regarding his skin condition?  How about at school?

Among the most serious concerns for us as parents is Logan’s lack of ability to sweat.  We’ve had a few scary experiences with him in the heat, particularly in the care of others who were not aware that his red cheeks are like little thermometers, warning you that he is overheating (thus we learned the importance of making sure people are well-informed of his condition, even in the winter.)  We always keep water with us, especially in the summer-time, and he has some fun little misting water toys to keep him cool.  Logan wears 100% cotton clothing, and doesn’t need as heavy a coat in the winter as most of us do.

The biggest concern when he first went to school was that the whole staff understands his need to be kept cool.  His school does not have air-conditioned classrooms.  We supply his teachers with spray bottles and whatever else they may need to keep him cool while he’s in their care.  All of the school staff understand the dangers of allowing him to get too hot, and even staff members who don’t have him in their classes are aware of his condition and help keep an eye on him. Within the first month or so of each school year, I am able to relax knowing the teachers are well-informed and that he is in good hands with them.

The teachers have also been fabulous when it comes to teaching other kids in his class about his skin disorder.  At the beginning of the school year, his teachers have an introductory lesson about ‘differences’ that helps his classmates understand the condition. They talk about differences in height, hair color, eye color, freckles or none, dark or light skin, etc. They then share how some people have dry skin, and give a little explanation of ichthyosis (in simple terms) to the kids.  They share what things Logan does differently than they do, like stay inside at recess if it’s too hot out, get more drinks at the water fountain, etc.  They invite Logan to share whatever he would like to with his class.  It’s quick and simple, the kids understand it very well, and they’re completely supportive of Logan throughout the school year.  I believe his classmates even forget about his skin condition, just as we do at home.

Another concern we have is other students at the school (non-classmates) not being properly informed about the disorder.  Kids who don’t know Logan might be surprised when they see him peeling for the first time.  It can be kind of shocking, and children don’t always know the best way to handle their curiosity about it.  Some people may call it ‘bullying’, but in these early grades, I don’t think there is any malicious intent. 

People mentioning his skin only becomes a problem for Logan when kids have not been taught how to handle their questions properly, and ask in a derogatory or negative tone, and he is made to feel like he’s strange or weird because of it.

How does Logan react when others stare at him? How do you handle that as parents? And how do you inform people about ichthyosis and FIRST?

So far, Logan is not self-conscious of, or even concerned about, any of the visible aspects of ichthyosis.  He doesn’t worry about how he looks or whether the dandruff flakes are easy to see if he wears a dark colored shirt.  And thank goodness, since he’s only seven! So far, he doesn’t notice people staring at him, or whispering and pointing at him after he passes by (this only happens when his skin is at the peak of its peeling phase).  But I certainly do!

 It does not anger or upset us as parents, but it can be quite disappointing when adults are gawking with their children, and not teaching their kids how to properly handle their questions when they see someone who looks different from them. (I guess I expect more from the adults than from kids!) When people act shocked when they see him peeling, I have been known to run back to them, tap them on the shoulder, and quickly educate them about his condition. I keep little info cards that I made in my car and purse to give out to people in public who seem even slightly curious. I might smile and say, “Handsome boy, huh? Takes after his Daddy,” just to lighten the moment , then I hand them the informational card.* The more people understand the facts, the better.  I don’t want people left with false notions or assumptions simply because I failed to inform them.  Education is vital.

In our family, we like to assume that people have good intentions, that they are really just surprised when they see him peeling, and don’t realize how their reaction looks, especially from our perspective.  Most people are apologetic and embarrassed once the condition is explained to them.  In fact, many are relieved just to know that we didn’t forget to put sun block on him! (We just laugh about that one.)

We really do appreciate respectful questions!  We don’t want Logan to feel pity or shame for his skin condition, so we encourage him to answer the questions himself whenever possible.  At times he may not feel like sharing details and simply says, “I just have dry skin”; but usually he’s pretty good at explaining ichthyosis himself.

FIRST was recently chosen to be a recipient of a large fundraiser put on by our local MOMS Club, in which I am actively involved. That was a wonderful opportunity to create awareness in our community. Since it was a Mom’s Club event, I knew many parents would be attending.  I wanted to empower parents and give them tools to help their kids appropriately handle situations when they see anyone who looks or acts different from them. 

I would encourage every member of FIRST to seek out opportunities to share whatever it is that you feel will be most helpful to you, your child/ren, or whomever is affected by a skin disorder. It can be a wonderful and empowering experience to kindly educate people, even when they are rude about it. By taking the high road, we leave an impression on those who might not have been properly taught by their parents, as well as those who witness the respectful interaction (especially our own kids!)

* Note: The FIRST office has a supply of awareness cards available for our members to hand out.

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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.