News

FIRST's Executive Director Attends the Derm Nurses Association Convention

Date: 04/08/2013

by Jean Pickford

Attending the Dermatology Nurses Convention this past weekend was just another reminder of the old adage “It takes a village.”  For those raising an affected child and living with ichthyosis, you know how many people can be involved in your care. It’s not all about the dermatologist. Other professionals play an integral part in your healthcare–geneticists, ophthalmologists, otolaryngologists, pediatricians, and nurses.  At times, the doctor’s nurse can be the most involved in your case and your greatest ally.  I’m sure everyone can recall at least one time when a nurse made all the difference in your doctor’s appointment.

Each year the Dermatology Nurses Association (DNA), hosts a three-day annual convention featuring educational lectures, symposiums, and workshops. Dedicated exhibit times provide an opportunity for the nurses to visit the Coalition of Skin Diseases booth, in addition to related industry and pharma booths. The CSD represents 16 patient advocacy groups (including FIRST) who work together to expand the visibility of skin disorder.

This past weekend, I volunteered to man the CSD booth at the convention in New Orleans. I was joined by the CEO of the Cutaneous Lymphoma Foundation as well. What an experience! Dermatology nurses are so thirsty for information, particularly about the patient advocacy groups. They enthusiastically took our brochures, asked great questions, and were genuinely grateful to have our information to pass along to their patients. Many stopped and shared a story about a particular patient who really touched their heart and how desperately they wanted to help them.  After each exhibit time closed, I left with a warm, positive feeling. These nurses care so much about their patients, which are ultimately our members and families. It’s nice to know that so many are working together to improve the quality of life for those affected by a skin disorder.