(October 1, 2001) - During Ichthyosis Awareness Week members of F.I.R.S.T. host fund raisers in their local area and contact media to educate their communities about the disease and how it affects their family. It is the hope of the ichthyosis community that others will learn about the disease and gain a better understanding of how it affects the individuals and families who have been affected with it.
Ichthyosis Awareness Week is dedicated to educating the public about a skin disease affecting over one million people in our country. Ichthyosis is genetic. It has no ethnic boundaries and no cure. It can be disfiguring. Dermatologists estimate there are at least 20 varieties of ichthyosis, ranging in severity.
The term ‘ichthyoses’ refers to a group of skin diseases characterized by dry, cracked, scaling and thickened skin. It can be described as a “traffic jam” of skin cells. The skin’s natural shedding process is slowed or inhibited; in other forms the production of skin cells is too rapid. Severe cases involve blistering, bleeding, high risk of infections, skin tightness that limits the closing of mouths and eyes, alopecia and dehydration, just to name a few. It causes unsightly scales on the body, which often subject a person to ridicule, rejection and isolation.
The most common form, ichthyosis vulgaris, affects one out of 250 people. The symptoms are very mild, and therefore may go untreated or undiagnosed. The skin has flat whitish scales that may be darker on extremities. In most cases, it does not appear on the face or joints, but can have accentuated markings on palms and soles. The ichthyoses become generally worse in dry climates.
Founded in 1981, the F.I.R.S.T. was established to help individuals and families affected by ichthyosis. The foundations’ services include publications, a listing of skin care products, a quarterly newsletter, a telephone support network, family conferences, advocacy, and a research program. F.I.R.S.T. is a membership organization, registering over 3300 households. F.I.R.S.T. is the only organization in the country devoted to helping individuals and families affected with ichthyosis.
