“Jenna” had a problem. He had been to more than 10 doctors, but no one could identify the cause of the cracked and peeling skin on his legs. They were incredibly painful, especially at night, and made his skin appear to be made of fish scales rather than human flesh.
Finally, a doctor diagnosed ichthyosis, a rare skin disorder that makes the skin so dry and scaly that it literally appears to belong to another species. In fact, the word comes from the ancient Greek root ichthys, which means, unsurprisingly, fish. While the severity of ichthyosis can vary from individual to individual, Jenna’s case was obviously quite severe.
“Often it was just agony,” says 28-year-old Jenna. “My legs hurt a lot and when I used to wrap them in bandages at night, the bandages would stick to my legs, making it excruciatingly painful to take them off.
“Whenever I went dancing, I prayed that the lights stayed off as I was too embarrassed for anyone to see my legs. They looked absolutely horrible, and I kept them completely hidden during the day just because I felt so embarrassed.”
Finally, a doctor diagnosed ichthyosis, a rare skin disorder that makes the skin so dry and scaly that it literally appears to belong to another species. In fact, the word comes from the ancient Greek root ichthys, which means, unsurprisingly, fish. While the severity of ichthyosis can vary from individual to individual, Jenna’s case was obviously quite severe.
What is ichthyosis?
In people with normal skin, the outer layer or epidermis contains cells that constantly divide and then shed. People with ichthyosis, however, have skin cells that reproduce at an alarming rate that is much faster than they can shed, or scales that don’t shed at all, causing a build-up of skin.
The result of this generally genetic skin condition is that cells pile up on top of each other, creating a thick, scaly appearance. Sometimes in severe cases like Jenna’s, the skin becomes almost unbearably dry and cracked, and can even restrict movement. Usually the legs are affected, but sometimes the hands and arms are also affected.
The problem is because this ailment is relatively rare, many doctors and even some dermatologists may not recognize it for what it is, so they give the wrong treatment or do not prescribe any treatment.
There are several main types of ichthyosis, including:
* Hereditary Ichthyosis vulgaris. The most common type, affecting about 95 percent of people with ichthyosis. The skin may appear normal when a child is born, but symptoms usually appear no later than the age of five. All parts of the body can be affected and it is often associated with atopic dermatitis. It is estimated that at least one person in 300 in the United States has this condition to some degree, and race and gender are not important. A child of a parent with the disorder has a one in two chance of having it as well.
* Acquired ichthyosis. As the name suggests, this type of disorder is acquired and usually appears in adulthood. It is very rare and is often attributed to the ingestion of certain medications or to the sufferer having an underlying medical or other condition, such as HIV / AIDS, leprosy, certain cancers, or glandular problems. . Severe poor nutrition can also influence whether an individual gets ichthyosis.
* Harlequin ichthyosis. Congenital condition in which a baby is born with thick skin all over the body, eventually cracking and causing deep, painful fissures. Incredibly rare, the chances of having it are only one in a million, as both parents must be carriers. Most children born with this condition die shortly after birth due to fluid loss, if they survive, life expectancy is not very high.
Signs and symptoms
It can be difficult for doctors to diagnose ichthyosis, although it is relatively common, as the mild forms are easily mistaken for other skin conditions. However, since conditions like eczema are often treated with steroids, to which ichthyosis does not respond (see below), it is important to get the correct diagnosis.
Here are some signs to look out for if you suspect that you or your children have ichthyosis vulgaris, the most common type:
* Scales on the front of the legs.
* Scales on the back of the arm.
* Scales on the back or scalp
* Scales on the cheeks and forehead, which is more prominent in children of a younger age.
Keep in mind that there are also certain areas of the body that are not affected by the condition, so if you have itchy and flaky skin in those places, there’s an excellent chance it’s something else. These areas are: the abdomen, the face, the front of the neck and the creases in front of the knees and elbows (which are usually the main places for eczema).
Treatment options
While ichthyosis vulgaris can improve with age, constant therapy is often required to keep flaking under control and make the patient more comfortable in their own skin. Typically, a two-pronged approach is taken, one an emollient or moisturizer to hydrate the skin, the other an ointment to prevent moisture from evaporating and causing the skin to become even more dry.
Typically alpha hydroxy acids are used to hydrate, while other solutions are used to remove hardened scales and reveal smoother skin. Salicylic acid is commonly used, what you would use would depend on your doctor’s advice. Steroids don’t usually help, although topical retinoids can be helpful.
In Jenna’s case, she was advised to apply both a moisturizer and an ointment several times a day, and to wrap her legs in cellophane every night once they were creamy enough. Within a few months, his condition improved to the point where the scales were no longer visible at all. “They have literally brought me back to life,” he says.
The information in the article is not intended to replace the medical expertise and advice of your healthcare provider. We encourage you to review any decision about treatment or care from an appropriate healthcare provider.