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This week we’re covering a number of rare diseases that, like fibromyalgia, deserve more attention. And of course, if you suffer from fibromyalgia, you know how annoying skin conditions can be, since they tend to be a symptom of the condition. With that in mind, let’s look at a rare, but debilitating, skin condition: Ichthyosis.
Ichthyosis is a condition where the skin takes on a scaled appearance that is often disfiguring. As a result, sufferers are forced to deal with a number of psychological and physical conditions that make living with the disease difficult. So let’s look at what exactly ichthyosis is, what the complications are, and how it can be managed.
What Is Ichthyosis?
Ichthyosis is a term that comes from a Greek word meaning “fish.” That reflects the appearance of the skin of someone afflicted by it. Basically, the skin takes on a scaled appearance that resembles the outside of a fish, thus the name.
The underlying cause of the condition is genetic. Some people carry a genetic mutation that can be passed down to their offspring that leads to the skin condition. And in rare cases, the genetic mutation can occur spontaneously in people who have no family history of the condition. Thus, you could be completely free of it but end up having a child who suffers from it. Like many genetic conditions, this one is particularly rare.
It’s estimated that about three hundred children are born every year who suffer from it. Obviously, that’s not a large number within the context of the total population. But that can also make the condition worse for those who do have it. The general lack of public awareness can make them feel incredibly isolated because the disease is so visible.
The condition can range from severe, where it covers the entire body, to mild, where only certain portions of the skin are affected or the scaled appearance is less pronounced.
But regardless of how severe the condition is, there are a number of complications that usually come with it.
What Are Possible Complications?
The skin serves a very important purpose that we don’t often think about. Our bodies are constantly bombarded with dust and particles in the air along with dangerous bacteria. The skin serves as a protective barrier protecting our bodies from these airborne dangers. And someone with ichthyosis loses much of this protection due to damage to the skin.
This makes them vulnerable to skin irritation leading to chronic itching and frequent skin infections that can become dangerous if left untreated or in people with compromised immune systems. In addition, the skin can become dehydrated very easily. And the condition sometimes leads to other complications including rapid weight loss, blistering, and overheating.
But one of the most serious complications of the disease is the psychological toll it takes on the people who suffer from it. Most of us suffer from insecurities related to our appearance. So, it’s easy to imagine how someone who suffers from this sort of disfiguring skin condition would feel about their appearance.
People who suffer from this kind of disfigurement have issues getting and keeping jobs and living a fulfilling personal life. Thus, anyone who has the condition is forced to adjust their entire life around it. Obviously, this kind of situation can be completely debilitating socially.
How Is It Treated?
There is no cure for ichthyosis. But there are a number of ways that the condition can be managed. Unfortunately, they are a bit limited in their ability to really control the symptoms.
The majority of treatment options are based on protecting the skin. Different over-the-counter skin creams and moisturizers can be effective to limit itching and blistering. And frequent baths in tepid water with salt or salicylic acid can be helpful for reducing the scaling caused by the condition. Finally, making sure that your diet is heavy in Vitamin A can help to reduce the skin complications.
Unfortunately, there are no medications that are really effective for treating the condition. But research is ongoing into possible treatments. At the moment, we are waiting for some form of breakthrough in the field. Additional financing for research would be useful on this front. But due to the fact that the condition is so rare, most people have likely never heard of it. And efforts to raise awareness of the condition have been limited.
If you’d like to help, you can donate to the Foundation for Ichthyosis & Related Skin Types here.
So, do you have ichtyosis? How do you manage it? How can others help to raise awareness and treat people who suffer from the condition in a more positive way? Let us know in the comments.
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