Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix “ichthy” is taken from the Greek root for the word fish.
FSR is the leading international nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.
A study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis, more than 16,000 babies are born with some form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
At present time there is no cure for ichthyosis, however dedicated researchers and physicians have and continue to develop effective ways to help manage the disorder. Parents are also playing an important role in sharing different treatments they are receiving with fellow parents of affected children and affected adults.
Besides the common scaling condition of the skin and depending on the severity, there may be associated psychological symptoms due to the abnormal appearance of the skin. Ichthyosis is disfiguring for most affected individuals. In addition to the numerous medical complications like dehydration, infections, chronic blistering, overheating, and rapid-calorie loss, patients with ichthyosis are subjected to psychological issues. Patients are often ostracized, and concerns of isolation, low self-esteem, and depression are common due to the appearance of their visible, chronically shedding skin.
The skin is the primary deflector for the human body. It encases and protects our body from the external environment. The barrier that makes up the skin has many components, which include a barrier to excessive loss of body fluids or uptake of noxious chemicals in the skin. The skin is made up of many layers, but it is the outermost layer that provides the most protection and it is this layer where most ichthyosis patients have a defect.
Most forms of ichthyosis are very rare. The genetic mutation that causes the disorder is passed from parent to child. In some cases, however, neither parent exhibits the disorder themselves, but they are carriers of the defective gene. When two carriers pass their mutated gene on to a new life, the child will inherit the disorder. In some very rare cases, the genetic mutation occurs spontaneously in the affected generation.
FIRST offers a vast library of information available to guide you on your journey to understanding ichthyosis and its implications. Ranging from a basic overview to an in-depth look at how ichthyosis is passed genetically, information for caregivers and teachers, our library includes booklets, tips for living with ichthyosis, and our newsletter, Ichthyosis Focus.
FIRST’s mission is to improve lives and seek cures for those affected by ichthyosis and related skin types. We are a caring organization recognizing the unique challenges faced by our community and will provide support with kindness and empathy. Full of hope while celebrating today’s strengths and successes, we strive to convey all individual affected by ichthyosis that the future will be filled with friendship, support and a cure for ichthyosis. We will conduct ourselves in a trustworthy, ethical, and reliable manner in everything we do and say and provide accurate and timely information about ichthyosis to meet the medical, social and educational needs of our community.