Harlequin Ichthyosis is an extremely rare genetic skin disorder that affects approximately one in 500,000 people, the chances of being born with the disorder is one in a million. Despite medical advances, half of the babies born with the disorder die. Due to the level of severity, there is no known cure for harlequin ichthyosis, but doctors are actively working to improve the quality of life for those who suffer with the disorder.
The name of the disorder is derived from the greek word ikthys, meaning fish, and the word harlequin comes from the child’s appearance after birth. Because the newborn's skin is so tight, facial features such as the eyes, mouth, nose, and ears turn out to look distorted. The eyelids may be inverted and the mouth is pulled wide open, mimicking the smile of a clown, hence the …show more content…
Because their skin does not function as a ‘normal’ epidermis layer, they are extremely prone to infections, which could very likely turn out to be life threatening for them. People with harlequin ichthyosis are not able to regulate body temperature due to their reduced ability to sweat, and they tend to lose water easily, leading to abnormalities in electrolyte levels. Those who suffer with harlequin ichthyosis may not be able to grow much hair, either, due to the excess skin blocking their pores.
Although there isn’t any cure for harlequin ichthyosis, there are some treatments that help those who suffer with the disorder maintain their skin. Many dealing with harlequin ichthyosis reveal that they wake up early every morning to soak in a bath or shower, before very painfully scrubbing off all the excess skin they have grown overnight. After they scrub their skin, they lather themselves from head to toe with medical lotion that helps moisturize their skin for several hours and re-apply accordingly throughout the
The name of the disorder is derived from the greek word ikthys, meaning fish, and the word harlequin comes from the child’s appearance after birth. Because the newborn's skin is so tight, facial features such as the eyes, mouth, nose, and ears turn out to look distorted. The eyelids may be inverted and the mouth is pulled wide open, mimicking the smile of a clown, hence the …show more content…
Because their skin does not function as a ‘normal’ epidermis layer, they are extremely prone to infections, which could very likely turn out to be life threatening for them. People with harlequin ichthyosis are not able to regulate body temperature due to their reduced ability to sweat, and they tend to lose water easily, leading to abnormalities in electrolyte levels. Those who suffer with harlequin ichthyosis may not be able to grow much hair, either, due to the excess skin blocking their pores.
Although there isn’t any cure for harlequin ichthyosis, there are some treatments that help those who suffer with the disorder maintain their skin. Many dealing with harlequin ichthyosis reveal that they wake up early every morning to soak in a bath or shower, before very painfully scrubbing off all the excess skin they have grown overnight. After they scrub their skin, they lather themselves from head to toe with medical lotion that helps moisturize their skin for several hours and re-apply accordingly throughout the