San Francisco, CA -- (SBWire) -- 06/26/2013 --The goal of most parents is to give their children the opportunity to live happy, healthy, and successful lives. However, no matter how hard parents try to provide for their children, unexpected health problems are often unavoidable. Such is the case with Harlequin Ichthyosis, a little-known genetic skin disease that results in dry, scaly, fish-like skin.
A website called HarlequinIchthyosis.net aims explain how Harlequin Ichthyosis works. The website features detailed information about the disease and its effects on the body. Specifically, Harlequin Ichthyosis is the most severe form of congenital Ichthyosis.
The skin disease is present from the moment the child is born and results in large, diamond-shaped scales across the skin. It also contracts certain parts of the body, including the eyes, ears, penis, and other appendages. In places where skin would normally fold, the skin can crack, leading to a serious risk of disease through bacteria and other contaminants.
In the past, Harlequin Ichthyosis was always fatal. Victims of the disease would experience dehydration, infection, and restricted breathing, although the most common cause of death was infection.
Today, HarlequinIchthyosis.net explains that things have changed, and victims of Harlequin Ichthyosis can enjoy longer lifespans thanks to drugs like Isotretinoin, also known as Isotrex. The advances of neonatal care and the pharmaceutical industry have also increased the odds of livability. The oldest living victim of Harlequin Ichthyosis is still alive today and was born in 1984, so a Harlequin baby no longer has a death sentence.
As a spokesperson for HarlequinIchthyosis.net explains, the information on the website is designed to help foster understanding:
“In the past, babies born with Harlequin Ichthyosis were immediately ostracized. The odd appearance of the baby coupled with a lack of medical understanding forced people to jump to the wrong conclusions. With our website, we want to help visitors understand Harlequin Ichthyosis while explaining how Harlequin Ichthyosis is becoming more and more curable.”
It’s easy to be confused by the unique name of the condition, which includes two words that are rarely used in the English language. At the HarlequinIchthyosis.net website, visitors will find a detailed breakdown of the name of the disease, which makes more sense when broken down into several parts:
“First, it’s important to understand the word ‘Ichthyosis’. Ichthyosis is derived from a Greek word called ‘Ichthys’, which means ‘fish skin’ or ‘fishlike skin’. ‘Osis’ is simply a suffix used by the medical field to denote pathological conditions. Harlequin, meanwhile, was a comic entertainer who was famous for wearing triangular shaped color-patched dresses. These dresses resemble the skin of victims of the disease, which is how it got the name ‘Harlequin Ichthyosis’.”
About HarlequinIchthyosis.net
HarlequinIchthyosis.net is a disease information website that explains the intricacies of a disease called Harlequin Ichthyosis. Harlequin Ichthyosis is a genetic skin condition that results in fishlike, cracked skin from the moment of birth. For more information, please visit: http://www.harlequinichthyosis.net
