Frequently Asked Questions

What should I do before my appointment with an ichthyosis specialist? Why do I need genetic testing? Why don't I sweat?

 

What is ichthyosis?
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.

Is it contagious?
Ichthyosis is not contagious. It is not caused by a bacteria, virus, or germs.

How many types of ichthyosis are there?
Dermatologists estimate that there are more than twenty-five varieties of ichthyosis, with a wide range of severity and associated symptoms.

Is there a cure?
No, there is no cure, only treatments for ichthyosis. Research continues to find a cure and improve treatments.

How many people are affected?
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 80 and often goes undiagnosed because it can be relatively mild.

What causes it?
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.

How is it treated?
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.

Is it always present at birth?
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.

What is genetic testing?
Genetic tests look for gene mutations which cause an individual’s skin disease.

Is genetic testing available?
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.

What are some of the problems associated with ichthyosis?

In addition to the constant production of skin, some people with ichthyosis may experience some or all of the following:
 

Are there psychological symptoms associated with ichthyosis?
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.

What is the Regional Support Network (RSN)?
The Regional Support Network is a place to come together and support each other through the sharing of knowledge, experience, and advice. It is our hope that all who join this caring community will find comfort in knowing that you are not alone on your journey.

Why is attending a regional meeting or family conference important?
Regional meetings and family 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.

What is the Physician Referral Listing?
Our Physician Referral Listing is a listing of dermatologists treating patients with ichthyosis and related skin types.  We do not publish our referral list, rather we direct our members who ask for a referral to the nearest physician on the list. We only offer a doctor’s name, address, and office phone number to a member who calls seeking the referral.  Contact Moureen Wenik via this link or by calling 215.997.9400.

What is the Product Listing?
FIRST offers a listing of products that have been successfully used by affected individuals. FIRST offers the complete listing to its membership as requested.  Requests for the Product Listing can be sent via this link.

Are discounts available on products?
Some manufacturers offer discounts on their product to FIRST members. Those discounts are noted on the Product Listing.

Is there any assistance to help me pay for the lotions, creams and products I use?
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.

Thanks to a generous donor, FIRST has established the Jane & Henry Bukaty Skin Care Fund to help alleviate some of the financial burden that may be facing our members.

What is the Free Aquaphor Program?
Beiersdorf, the makers of Aquaphor®, offer a free case of Aquaphor® to those requesting it with a note from a physician. Please contact the FIRST office for the details.

What is Ichthyosis Awareness Month?
Ichthyosis Awareness Month is a month-long campaign for FIRST members to host events that create awareness and generate funds for FIRST.

What can I do to help spread awareness about ichthyosis & 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.

What is the UFIRST Scholars Program?
Scholarships are available each spring for students affected with ichthyosis to advance their post-secondary education in partnership with FIRST.

How can I receive the quarterly newsletter?
Individuals who make a donation of any size to the Foundation or are registered as a member-in-need are eligible to receive FIRST’s quarterly newsletter, Ichthyosis Focus for one year.

What if I cannot afford to make a donation to be a member?
FIRST understands that especially during these economic times, circumstances may prevent you from making a donation. If this is the case, contact Donna Wiggins at the FIRST office via email or by calling 215.997.9400 and we can designate you as a member-in-need.

What are FIRST to Know Calls?
FIRST hosts a series of conference calls designed to provide information about issues relating to ichthyosis and daily living. For information about upcoming call, contact Moureen Wenik in the FIRST office via this link or by calling 215.997.9400.

How can I connect with others?
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 Program Director, Moureen Wenik at the FIRST office via this link or by calling 215.997.9400.


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