Danielle Piquette 2015-07-31 00:21:02
Members Making a Difference The Academy’s Members Making a Difference Award honors outstanding volunteer commitments by dermatologists. Each issue, Aspire highlights one of four annual winners of this prestigious award. DéDée Murrell, MD, has been making a difference for patients with epidermolysis bullosa (EB) since first being exposed to the disease as a dermatology resident over 20 years ago. During that time, she was attending UNC-Chapel Hill, and the National EB Registry had just been set up by Jo-David Fine, MD. It’s also where Dr. Murrell first started taking care of advance-stage dystrophic EB patients. Soon after, she moved to New York to collaborate on geno-type-phenotype correlations for junctional EB patients at Rockefeller University, and later established a career in Sydney, Australia, where she still resides today. Over the years, Dr. Murrell became acutely aware that very little was known about EB throughout Australia and New Zealand. In response, she established a registry and a national diagnostic lab for EB, along with multidisciplinary clinics at Sydney Children’s Hospital and St. George Hospital. Moreover, she helped with numerous EB cases in neighboring Asian countries—where awareness of the disease was also extremely limited. In addition to giving lectures, she saw various patients, and taught a multitude of trainees in her own department. “I also became very involved with the state DebRA (Dystrophic Epidermolysis Bullosa Research Association) groups in Australia, and helped them and the newly formed national DebRA to negotiate a national EB dressing scheme for Australia, funded by the federal government.” Before long, she was working with the founder of DebRA New Zealand—Anna Kemble Welch—as the medical director of a camp for teens with EB. Through Anna, Dr. Murrell was contacted by a charity called ‘Helping Orphans Worldwide’ (HOW), that was looking for someone to help local doctors in Vietnam care for infant EB patients. That was how Dr. Murrell first became involved. Between 2011 and 2014, Dr. Murrell worked numerous missions throughout Vietnam alongside the HOW organization, and helped increase awareness for the disease in several different areas. Her first mission in 2011 was to Ho Chi Minh City and Hanoi, where she assisted two severely affected recessive dystrophic epidermolysis bullosa children at a private hospital free of charge. HOW and DebRA helped to provide dressings, and the hospital hosted a two-day seminar to teach local doctors about dressing changes for EB patients, and other informative advice. “In Hanoi in 2011, we were based at the Hanoi Children’s Hospital where pediatricians had gathered about 30 EB families they wanted me to see, and give advice on their diagnosis. I visited their pathologist and geneticist, and we held several workshops for different doctor and nurse teams, as well as lecturing at the hospital grand rounds. Later in 2012, the pathologist came to visit my EB center for two weeks, bringing their biopsies so we could teach him how to process them and read the IFM slides.” In 2014, she was invited back by HOW to provide more education at the Children’s Hospital in Ho Chi Minh, and see several more EB families. “The families you meet on these volunteer missions are incredibly grateful for the assistance you provide, as it makes a difference in their lives. The local medical and nursing fraternities are also very happy to have experts visit who are willing to share their knowledge and transfer as much of it as possible so they can manage EB locally.” Today, the diagnostic lab in Hanoi is independently run, and the hospital she traveled to in 2011 is using its links in France for diagnoses. HOW also continues to fundraise to help provide dressings for EB children. When Aspire asked Dr. Murrell if she had a personal message for readers, she responded: “I would encourage any of you who have a passion to interact with people of different cultures and backgrounds to get involved in an environment where they need your specialist help….travel there and give to those people. Your expertise can help a pyramid of people after that if you can transfer some of that knowledge locally.”
Published by American Academy Of Dermatology. View All Articles.