Does the Difficulty in Sweating and Hair Loss in Ectodermal Dysplasia Affect Quality of Life, Family Life, and the Economic Health of Patients and Families?

December 2007

Overall, very little is known about the burden of cutaneous (skin) disease by patients and families with ED. Our research seeks to answer this question work by to exploring the quality of life, family impact, and economic impact in ED patients and families as it relates to difficulties in sweating (hypohidrosis) and hair loss (alopecia), nail changes, and frequent skin and nail infections.

Thanks to the nearly 50 participating adults, children and their caretakers with ED from the Atlanta, Georgia area as well as those who attended the recent NFED 2007 Annual Conference, we are steps closer to answering this question. We hope to have preliminary results available to share with the NFED by December 2007.

The implications of this research are enormous. The information obtained from this study could potentially influence planning and policy decisions at various levels of the state and federal government for both health care and for research. It also will provide a framework for future clinical ED research.

If you are affected by ED and are interested in participating in this 20–minute survey based study, please contact Mary Fete, RN, MSN at the NFED office at 618–566–2020 or info@nfed.org.

Thank you,

Emory Dermatology Research Group – Suephy C. Chen, MD, MS; Mary K. Spraker, MD; Zakiya M. Pressley, MD; and Bridget R. Bradley, RN, FNP

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