Our Rotary Speaker for December 6, 2016 was Deirdre Nero, a proud board member of the National Alopecia Areata Foundation ( NAAF) and a friend to several members of Rotary Club of South Miami!
The topic, going into today, was how to use advocacy and awareness to change negative things in your life into positives. Deirdre's negative is Alopecia Areata, which is an autoimmune disease that targets body hair, ALL body hair including nose hairs and eyelashes.
When you meet Deirdre, you wouldn't guess that she's bald, she wears a very realistic wig, however, to make a point, as the lecture began, she took her wig off (she named her wig Christine) then placed it on the nearest table. One of the Rotarians (Ellen Book), remarked not by shock, but by pure honesty and genuineness, when she plainly stated, "You are beautiful"!
This is a key point, frankly, one that shouldn't be dismissed nor overlooked. For, one of the issues with this autoimmune disease, (which can affect a person at any age) highlighted by Deirdre, is this feeling of a loss of beauty, or loss of femininity among women, and of masculinity among men. This mental anguish leads to anxiety, depression, bullying among children and even cases of suicide. However, beauty isn't determined by hair style, whether you have a full head of hair running the length of your back or are bare bald, it doesn't matter, nor does this define beauty, for true beauty is in the person.
Awareness
Deirdre went on to tell her story how as a young woman her hair loss began. Up until age 21, Deirdre actually had a full head of thick hair. Then one day, as she brushed her hair, she noticed this perfectly round bald spot, of course she freaked out and was petrified, not knowing what caused this (at the time she never heard about Alopecia Areata). Finally, after going to several doctors and dermatologists, she found out and heard the confirmation, "You have Alopecia Areata, and there's nothing we can do."
Currently there's isn't any known cure for this autoimmune disease, and frankly, not much in the way of awareness. For example, Deirdre, while shopping in the grocery store without her wig, often is mistaken as a cancer patient, so instead of buying produce, she often will go into a lecture about Alopecia Areata.
Alopecia Areata, isn't related at all to male pattern baldness, as this affects all body hair. And, there's a randomness to this type of baldness. Fortunately there's no discomfort with this hair loss, other than possible itchiness. Although for those that want to regain their eyebrows, they have to have cortisone shots, which are very painful. However, having eyebrows, does make a big difference, for facial expressions actually do depend on our eyebrows.
Advocacy
It is through advocacy, where we can raise awareness! Hair loss of this type is traumatizing, for when you lose all of your hair, you may not even recognize yourself in the mirror. Deirdre, decided to do something about this by finding out more through attending the NAAF conferences. At first, she would stay in the back of the room as she heard the stories of other people who suffer from this disease and the dramatic mental anguish this causes. Now, Deirdre proudly serves as an advocate and legislative liaison for the NAAF.
Recently Deirdre was instrumental in introducing the bill HR 4989, a cranial prosthetic medicaid coverage enhancement act, through her congresswoman Ileana Ros-Lehtinen. And, Deirdre is working on supporting new legislation through an approach that not only treats Alopecia Areata, but also other related diseases. As the cure for one related autoimmune disease could lead to the cure for another, a promising domino effect.
Additionally, through this advocacy, we can reduce instances of bullying for children suffering this disease while addressing school dress codes that may restrict the use of wearing a hat or scarf. Truly this kind of advocacy gives voice to those who were previously unheard!
To find out more on how you can help visit: https://www.naaf.org/advocate-for-change
That you Deirdre for raising our own awareness of Alopecia Areata through your continued advocacy!
By Jeff McNabb
