Patient and Caregiver Support

handAre you providing medical care for a child with ichthyosis? If so, then you are caring for their parents, too.
 
As a professional in the field of dermatology, you are likely aware that ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. Each year, more than 16,000 babies are born with some form of ichthyosis. 
 

A recent study determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis.1 This disorder affects people of all ages, races, and gender and usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.

Support and Education

As with many rare diseases, the journey for a new parent of a child with ichthyosis, as well as physician coping with a patient with ichthyosis, can be as overwhelming as it is challenging. The Foundation for Ichthyosis & Related Skin Types (FIRST) has an extensive library of information and connections that will answer many questions for new parents and help physicians and medical professionals guide these patients every step of the way. From feeling comfortable in those very first moments in the neonatal unit, to learning what to expect when their child goes to preschool, to finding support from other families and parents that have walked the very same path, FIRST has created a comprehensive New Parent online module full of guidance and information.

 Most importantly, in preparing the New Parent module, FIRST consulted with a committee of affected families and ichthyosis medical experts resulting in an all-inclusive mix of tips and tools. Additional topics include How to Communicate With Your Ichthyosis Medical Team, Bonding with Your Baby, Best Practices for Bathing, Caring for Infections and Scale Scalp, Tips for Creams and Lotions, Nutrition and Ichthyosis, Tips for Household Appliances, Ear Care, Diapers and Clothing, and Recognizing Infection. 

The New Parent Module is the first step in the ongoing development of a “Life Stages with Ichthyosis” series. For more information, please visit the New Parent Module at http://www.firstskinfoundation.org/new-parent-information. 

Maureen NevilleMs Neville is communications director of the Foundation for Ichthyosis and Related Skin Types, Inc in Colmar, PA. For questions and comments, please contact FIRST at 215-997-9400 or email Ms Neville at mneville@firstskinfoundation.org.

Reference

1. Milstone LM, Miller K, Haberman M, Dickens J. Incidence of moderate to severe ichthyosis in the United States. Arch Dermatol. 2012;148(9):1080-1081.