FAQ
Ichthyosis is a family of genetic skin disorders characterized by dry, scaly skin. Ichthyosis occurs worldwide and affects people of all races, ages, and gender.
EDD is the new name for ichthyosis and related skin types. It stands for epidermal differentiation disorder. This updated naming system is based on genetics, making it easier for medical teams to identify specific conditions and provide more targeted care.
Ichthyosis is not contagious. It is not caused by a bacteria, virus, or germs.
Dermatologists estimate that there are many varieties of ichthyosis, with a wide range of severity and associated symptoms.
No, there is no cure, only treatments for ichthyosis. Research continues to find a cure and improve treatments.
Most varieties of ichthyosis affect only one person in several tens of thousands. Ichthyosis vulgaris is the exception. It appears in approximately one person in every 250 and often goes undiagnosed because it can be relatively mild.
Ichthyosis is caused by a genetic defect called a mutation. Typically, mutations are inherited from family members, but sometimes can occur spontaneously in a fetus. These mutations are present at birth, but in some cases symptoms do not become apparent until later in life, though in many individuals with ichthyosis, problems with skin are evident from birth. The genetics of ichthyosis are discussed in much greater detail in Ichthyosis: The Genetics of Its Inheritance, a booklet available from FIRST. There are some unusual circumstances in which a change occurs in a gene during development and before birth that leads to ichthyosis manifestations that are more localized.
The goal in caring for ichthyosis is to hydrate (moisturize) the skin, to hold in natural or applied moisturizers, and to reduce scaliness so that the individual is physically and socially comfortable.
It is present at conception, although in some types, the symptoms do not become apparent until later in life. In other instances, it is obvious at birth that something is wrong with the baby’s skin.
Genetic tests look for gene mutations which cause an individual’s skin disease.
Yes. Genetic tests can help to distinguish types of ichthyosis and may help you or a family member to answer questions like, “What type of ichthyosis do I have?” or “What are the chances that I will pass ichthyosis on to my child?”
FIRST offers a listing of available testing resources. Yale University is hosts the national registry for ichthyosis & related disorders, follow this link for more information.
In addition to the constant production of skin, some people with ichthyosis may experience some or all of the following:
- Overheating: Many individuals with ichthyosis do not sweat normally. The thickness of their skin and the scale does not allow their sweat to reach the surface of their skin and cool them effectively. In some situations, the sweat glands may have not developed normally.
- Limitations in movement: The tightness of the skin may make it painful to move some parts of the body.
- Secondary infection: Splitting and cracking of the skin can lead to skin infections and/or systemic infections.
- Impaired hearing: Skin build up over the ears may occur and impair hearing. In addition, tightening of the skin around the eyes may inhibit an individual’s ability to close eyelids, which can cause drying of the eyes and risk damage to the cornea.
Itch - Some types of ichthyosis have other associated problems not listed here.
People with ichthyosis lead normal, productive lives. The severity of their skin condition, however, can sometimes lead to psychological symptoms as individuals work to cope with the appearance of their skin and other problems associated with their type of ichthyosis. In addition to the medical complications, patients with ichthyosis may be subjected to psychological issues including feelings of isolation, low self-esteem, and depression.
One day meetings and national conferences are an excellent way to connect those searching for information and support in living with ichthyosis with each other. Affected individuals sometimes feel isolated and rarely have the opportunity to meet other affected people. The meetings and conference provide members with important connections with others who have experience living with ichthyosis, and to share their feelings with others who understand their condition.
FIRST offers a listing of products that have been successfully used by affected individuals. FIRST offers the complete listing to its membership as requested. The listing of member-recommended products is available on FIRST’s website.
Some manufacturers offer discounts on their product to FIRST members. Join our community!
FIRST realizes that the fight against ichthyosis is not only medical, but also financial. As families of affected individuals maintain their daily routine of treatments, it can be complicated by the ongoing costs of medical supplies and other comforting aids and procedures.
FIRST has established the FIRST-Aid Skin Care Fund to help alleviate some of the financial burden that may be facing our members. Also available is the Diya & Aliya’s Friends Skin Care Fund for children.
FIRST also launched The Weary Fund, established by a generous donor, to assist with the purchase of a window air conditioning unit to avoid overheating.
Ichthyosis Awareness Month is a month-long campaign in May each year for FIRST members to host events that create awareness and generate funds for FIRST.
There are many options to create awareness. You can host an event like a bake sale, car wash, or even a golf tournament. Stories in local newspapers can be helpful in educating the public about ichthyosis and you may choose to be interviewed for an article about ichthyosis and how it affects your family. You can also contact your local member of congress to advocate for more attention on ichthyosis and FIRST. The FIRST staff can help you take any idea and turn it into an awareness event.
Scholarships are available each spring for students affected with ichthyosis to advance their post secondary education in partnership with FIRST.
Individuals who make a donation of any size to the Foundation are eligible to receive FIRST’s quarterly newsletter, Ichthyosis Focus for one year.
If you would like to connect with someone who is either affected with the same type of ichthyosis, or who lives in the same part of the country, contact the FIRST office here or by calling 215-997-9400.
