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Every patient has a story.

The "I'm Not Average" campaign features fellow Americans whose lives have been impacted by treatments and cures for debilitating, chronic, or rare diseases.

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I'm Not Average: Deirdre N.

Condition:
Alopecia Areata


Funny how a “little thing” like losing your hair can change the person you are right down to your core.


My name is Deirdre Nero. I am 39 years old and for 18 years I have lived with Alopecia Areata. This disease has changed me. It has changed my life, and my mind, and my heart. It has made me weak and vulnerable, battered my self-esteem, and heightened my insecurities… yet it has made me a stronger and better person at the same time. Funny how a “little thing” like losing your hair can change the person you are right down to your core. At age 21, my first bald spot appeared, it was the size of a fifty cent coin. I was blow-drying my long curly hair in the bathroom mirror while living in Spain, during a study abroad program. How can this be? What is this? I called my mother on a poorly connected transatlantic call and cried hysterical tears as I tried to tell her what I found. I remember her saying to me that she “couldn’t understand a word I was saying.” The inevitable string of doctors, blood tests, and dermatologist appointments followed. Your thyroid is fine. You are healthy. The eventual diagnosis: You have Alopecia Areata. Huh? Alo-what? I mean who had even heard of this strange thing…certainly not me. Ok , so how do I cure it? Fix it doc; make me better. What pill do I have to take? “Sorry, there is no cure. We don’t even really know what causes it. But you must be stressed. You are so stressed.” I swear I have had people telling me for so many years now that I am so stressed out, that it really stresses me out!

As the years past and the more I began to live with Alopecia Areata, the thing I had dreaded ever since that day when I did the first internet search on Alopecia Areata. My alopecia went from totalis to universalis, and I lost my eyebrows, eyelashes, and most of my body hair. Losing my eyebrows and eyelashes threw me into a profound funk. I felt really uncomfortable in my own skin. Hiding behind wigs suddenly didn’t seem as effective. I was going to be found out, it was just a matter of time. My sister, a very talented jewelry designer, suggested an earring line using my bald head as the backdrop for displaying them. After resisting, I decided that this project might help me come out on my own terms and help me deal with things. Soon, B.A.L.D. was born. A new jewelry line with a name that stands for Bad Ass Lawyer and Designer. Me, the Bad Ass Lawyer. My sister, the Bad Ass Designer. Doing something together to try and bring some awareness to Alopecia, empower women with hair loss, and raise some money for alopecia charities like The National Alopecia Areata Foundation (NAAF).

Through all of this I have become very active with NAAF. I have walked the halls of Congress bald. I’ve sat in front of legislative aides and members of Congress to show them the face of this disease and to educate them. I have advocated for programs that would increase research funding at NIH and FDA, and have worked towards Medicaid coverage for wigs, when they are medically necessary, for low-income individuals. Advocating for NAAF has really helped me find the good in my disease and helped empower me to deal with it in a positive way.

Condition:
Alopecia Areata


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