Ichthyosis Awareness Month

You may or may not be aware that May is Ichthyosis Awareness Month. Many of you probably are thinking "What is Ichthyosis? I have never heard of that." I hope this blog can shed much needed light on something that is very near and dear to my heart.

Ichthyosis is a group of skin disorders characterized by dry, scaly, or thickened skin. The prefix "ichthy" is taken from the Greek root for the word fish.
Ichthyosis is usually present at birth, or within their first year. There is no cure for Ichthyosis. It is a life long battle.

Scaling of the skin is a common condition. There are various types of Ichthyosis. Depending on the severity, Ichthyosis can be disfiguring for most affected individuals. Ichthyosis can bring on multiple side effects such as:dehydration, infections, chronic blistering, overheating, and rapid-calorie loss. Patients are known to struggle with low self-esteem and depression due to the appearance of their skin.

Your skin is your body's largest organ.The skin performs six primary functions which include, protection, absorption, excretion, secretion, regulation and sensation. The skin protects and deflects your body from environmental elements. Skin is made up of many layers but it is the top outer layer of the skin that Ichthyosis patients have this defect.

There are over 20 different types of Ichthyosis. My son has Non Bullious (non blistering) Congenital Ichthyosiform Erythroderm (CIE). When he was born, his body presented itself with a thick collodion membrane over his skin. This had to slough off before we could determine the severity of his condition. Ian's condition is mild but he does struggle severely with regulating body temperature, flaking of the skin, and red irritated patches. Ian had multiple MRSA (type of staph) infections as a baby due to his skin being compromised. He also struggled severely with being under weight and failure to thrive. Ian is still small for his age.  His skin is constantly trying to repair which causes his body to burn calories at a much faster rate than those not affected by Ichthyosis

Summer time used to be one of my favorite seasons until I became a mother. Summer is now a season I dread. Summer can be a very dangers season for Ian and those with Ichthyosis. When our body temperature rises we will start to sweat in order to cool off. When Ian gets hot his body temperature continues to rise. He is not capable of sweating. That's right, his body does not sweat. He can not cool off on his own. He can over heat, have a heat stroke and things can become life threatening. Ian has a cooling vest he wears during activities that would cause his body temperature to rise. Even a short car ride during the day in mid July can be dangerous. We treat his vest like a epi pen during warm months. It stays with him. Everywhere he goes, his little red insulated backpack goes too.

 

Come back next week as I share important information my son and those of the Ichthyosis community would like you to know.