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at Marlins Stadium with a young girl, also
living with Alopecia Universalis.
During September, focus falls on an autoimmune disease called Alopecia Areata. My name is Deirdre Nero, and I serve as the Secretary of the Board of Directors and an Advocate for the National Alopecia Areata Foundation (NAAF). For those who have never heard of this disease, Alopecia Areata is an autoimmune disease that affects almost 7 million people in the US alone of all ages, races, and genders. It causes hair loss that can range from small round patches of hair loss, to total scalp hair loss, and even loss of all hair on the head, face, and body. Alopecia Areata can begin suddenly and rapidly progress.
As for me, I began my journey with this disease over 23 years ago when I was 21 years old and found my first bald patch. Over the 23 years that followed I went from varying severity of patchy hair loss (Alopecia Areata), to total scalp hair loss (Alopecia Totalis), and finally to total loss of all my hair including my eyebrows, eyelashes, and even my nose hairs (Alopecia Universalis). All are forms of what we refer to collectively as “Alopecia Areata” (commonly just called “Alopecia”). This year, I am writing this message for Inspire Health magazine in hopes of bringing more awareness to the disease, especially during September which is Alopecia Awareness Month.
In these times of a pandemic, I have been unable to host the fundraising events I typically hold on an annual basis in the community in order to both raise awareness and funds for the disease. I was lucky enough to join with the Coral Gables Woman’s Club (CGWC) in hosting our second annual “Gringo Bingo” night party in June at a beloved local restaurant, Clutch Burger, who hosts this monthly CGWC event. Despite COVID-19 related limitations, that event was a success and gathered people in the community for a night of bingo, food, music, and fun!
With recent spikes, other fundraisers for NAAF scheduled for September and November have been put on hold; however, what cannot be put on hold are the needs of those suffering with Alopecia Areata. This disease grips a person’s self-esteem, self-image, and self-worth in its clutches and is emotionally painful for those affected as well as their loved ones. Alopecia makes a person stand out physically and be visually different. For those navigating through difficult periods, such as one’s teenage years, it is extremely hard when at that age, many are judged by their looks. During a time when we are dealing with the pandemic and cannot congregate normally, those suffering with Alopecia can feel even more isolated. My hope is that this article will encourage readers to reach out and become better informed about this disease. If you would like to contribute to NAAF, the premiere patient foundation offering support, research, and advocacy for the disease, please visit http://support.naaf.org/deirdrenero.
Deirdre Nero is an Immigration Attorney in Coral Gables, FL and owner of NERO Immigration Law, PL. She has served as the Secretary of the Board of Directors of NAAF for the past 5 years, and as one of NAAF’s patient advocates and legislative liaisons since 2013. Deirdre is also the NAAF support group leader for South Florida. She can be contacted at dnero@neroimmigration.com.
