September is Alopecia Awareness Month. If you would like to donate to NAAF or read more about Deirdre’s journey with alopecia areata, please visit support.naaf.org/deirdrenero. Photo credit: Maksimilian Dikarev
I found the first bald patch on my head 19 years ago, while blow-drying my long, thick hair. Little did I know the significant impact alopecia areata would have on my life. I am now 40 years old and have been living with this autoimmune disease for nearly half my life.
My immune system attacks my hair follicles, making my hair fall out. My condition has evolved, going from bald patches to total loss of scalp hair to the most severe form of the disease – total loss of all body hair, including my eyebrows and eyelashes. At times, my hair has started to grow back in random fashion, only to fall out again. This is a perfect example of the unpredictable course of this disease, which can cause significant emotional distress. Looking in the mirror and being startled by your own unrecognizable reflection is a painful experience that I would not wish on my worst enemy.
This disease has changed my life, my mind and my heart. It made me vulnerable, battered my self-esteem and heightened my insecurities. But at the same time, it has made me a stronger, more compassionate person. As a woman, lawyer and business owner, I strive to present a confident image to the outside world. I spent many years in fear of being discovered as a bald woman and viewed as sick, bizarre or ugly. One of the best things I did was to stop hiding my condition. Showing my authentic self to people and being vulnerable is an incredible show of strength.
There is little known about the causes, treatments or cure for this disease, which only adds to the pain. There is not a day that goes by that I do not want to cry when I look in the mirror. I often worry about how a client, colleague, friend or love interest sees me. Many people say “it is only hair” or “at least it’s not cancer.” These comments, while often well-intentioned, are insensitive and usually make me feel worse.
Additional funding for research will help improve the lives of the millions of people in the U.S. living with alopecia areata. Few have heard of the disease, so awareness and advocacy efforts also are so important. This is why I recently joined the Board of Directors of the National Alopecia Areata Foundation (NAAF) and serve as it’s Secretary. I also serve as a Legislative Liaison. From our work, a bill was introduced in the U.S. Congress to require insurance companies to cover cranial prosthetics. We were also successful in getting the FDA to select alopecia areata as one of the few diseases to have a Patient-Focused Drug Development Initiative in 2017.
Advocating for patients has helped me feel empowered. I am proud to serve as a role model and support system for others living with alopecia areata. Doing something positive with the hand I have been dealt has helped me cope with my disease and reclaim my self-confidence so I can face the world head-on.
Deirdre D. Nero, Esq., is founder of the immigration and nationality law practice NERO Immigration Law, P.L. She is rated AV Preeminent byMartindale Hubbell, the highest possible peer ranking for professional excellence. Ms. Nero received her law degree from the University of Miami, graduating cum laude.