On Saturday evening's dinner at The 2:1 Conference, I sat with a bunch of ladies that I had not gotten to know yet. Of course, we got to know one another over dinner and laughing! One of those ladies was Susan who blogs at Homeschooling Hearts & Minds. She told me about her son Peter, who has a rare disease called Lamellar Ichthyosis.
Since I am no stranger to the life of helping a child with a chronic illness, I immediately could relate to what life must be like for Susan and her family. I felt the stirring of the Holy Spirit in my heart to help Susan spread the word and bring awareness to what life is like for people with Lamellar Ichthyosis.
I hope you'll visit Susan's blog, as well as the foundation she mentions at the end of her guest post here today. Let's help bring awareness and fund more research to learn how to treat and cure this condition. God can take a small act and use it to change someone's life. Are you willing to take a small step?
This is my 6-year-old son, Peter.
He loves to build with Lego, draw monsters, play superheroes, spar with cardboard swords, and do all the other things little boys like to do.
He is definitely ALL boy!
But sometimes his skin gets in his way.
Peter has a rare, life-long condition called Lamellar Ichthyosis. May is Ichthyosis Awareness Month and so I‘d like to tell you more about how Ichthyosis affects Peter.
Lamellar Ichthyosis is a rare, genetic skin disorder that causes Peter to develop itchy, plate-like scales over large parts of his body, including his scalp, neck, most of his torso, and his hands.
Icthyosis interferes with:
- the barrier function of his skin (his skin absorbs things more readily than normal skin)
- his ability to cool himself (he can overheat in as little as 75 degrees)
- his physical comfort (he will scratch until he bleeds)
- his physical appearance and self-image
Over the past 6 years a lot of well-meaning, big-hearted friends (and strangers, too) have met Peter and tried to understand this thing called Ichthyosis. There’s something in human nature makes us want to figure other people out by relating it to our own experiences. I think it’s an admirable trait in some ways, but it tends to fall short when it comes to understanding the reality of my son’s life.
Sometimes it’s easier to understand what something is by knowing what it isn’t, so I’m going to share some of the things people have tried to compare Ichthyosis to.
Icthyosis isn’t a bad case of all over cradle cap or dandruff.
When Peter was about a month old, a well-meaning friend asked about his condition after church, saying, “Isn’t it something like cradle cap?”
Cradle cap is another thing doctors don’t seem to know very much about. Fortunately, it usually clears up in time, and most babies don’t seem to be bothered by it (one of my children did have persistent cradle cap, but it never bothered her at all).
Cradle cap is an oily residue that sticks to the scalp, but it’s not actually a part of the scalp. It can be dissolved with oil and washed out.
Ichthyosis does not clear up in time and the scales on my son’s skin are actually thickened areas of skin. They itch like crazy.
Ichthyosis isn’t a bad sunburn.
I remember when Peter was a still a wee one (ok, Peter was never a wee one, he’s always been a bit of a linebacker ;0) and our family took a road trip across country for my sister-in-law’s wedding. We stopped at a rest area and I took him into the ladies’ to change his diaper and cream his skin on one of those pull-down diaper changing things.
Another traveler stopped and said, “My, he sure got a bad sunburn!”
It would be wonderful if his skin would peel off, heal, and be normal!
When Peter is peeling, he really does look like he has a sunburn. The skin underneath is pink and tender. The difference is that the peeling is not a sign of healing, it’s just part of his never-ending skin cycle. He peels over and over and over again.
Ironically, he doesn’t sunburn in areas where he’s scaly, although Peter does have normal skin in some areas (arms, legs, his sweet cheeks), which is prone to sunburn.
Ichthyosis isn’t a childhood condition that you grow out of.
I’ve heard this one many times, “Oh, he’ll grow out of it!” Peter is such a sweet kid and people don’t really want to believe that he’ll have Ichthyosis his whole life.
There’s no cure for Lamellar Ichthyosis. There are some rare cases of people whose symptoms have vastly reduced to the point where their skin seems almost normal, but that’s not the norm.
Ichthyosis is a genetic disorder and our genes don’t just magically fix themselves. That’s not to say that I wouldn’t love a miracle. Peter has many people praying for him and as one priest said to me, “God can do all things, and yes, I’m going to pray for a miracle.”
It is estimated that 1 person in every 200,000 is afflicted with Lamellar Ichthyosis.
Understandably, it is a much misunderstood condition, which is why awareness is so important. Children with Ichthyosis often feel shunned and rejected by their peers, who simply don't understand.
There are other forms of Ichthyosis as well, some more severe than Lamellar, and some less severe. For more information about Ichthyosis and how you can help, please visit the Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.). http://firstskinfoundation.org/
To read more about Peter, and how Ichthyosis affects his life, please visit Homeschooling Hearts & Minds http://homeschoolheartandmind.blogspot.com/search/label/child%20ichthyosis
Susan is a follower of Christ, wife to her best friend, and home schooling mama to 4 zany kiddos. She writes about her family’s day-to-day journey of learning while living at Homeschooling Hearts & Minds.