October 23, 2016
BENEFITING: NATIONAL ALOPECIA AREATA FOUNDATION
ORGANIZER: NATIONAL ALOPECIA AREATA FOUNDATION
EVENT DATE: Sep 14, 2016
I was blessed with beautiful spiral curls- "banana" curls since I was a young child. People would always comment on it and tell me how lucky I was. How beautiful my hair was, and how you can never fake curls like that. They often still do today.
Alopecia has also been a part of my life for almost as long as I can remember. When I was 5 years old, my parents noticed a quarter-sized bald spot on the top of my head. They brought me to a doctor, who diagnosed me with alopecia areata- an autoimmune condition causing baldness with no known cure and few successful treatments available.
Since that time, my spots would come and go. They usually creeped in along my hairline and eventually filled back in with fresh, spikey growth. I learned to hide it the best I could by styling it, and as I grew older I became better and better at doing my own hair so that I could manage the "evidence" of alopecia. I continued that way, somewhat on edge about my spots, but under cover, until I was in my twenties.
In my twenties, my spots began to grow. They creeped into the front part of my hairline and threatened my beautiful curls. I strategically highlighted my hair to hide the pale spots peeking out from my dark brown curls. I went to a dermatologist, who injected steroids through painful shots under my scalp where spots lurked. This would control the speed and size of the spots, but only served as a bandaid. I had to keep it up every month.
At age 26, I was diagnosed with celiac disease and had to go on a strictly gluten-free diet. Many people said it might help my alopecia, and I was excited to see if it would reverse itself. Well, much to my dismay, the opposite happened. My hair began to fall out in chunks over a matter of months. It was probably destined to happen regardless of being gluten-free, but it was quite a double-whammy to cope with a life-changing dietary restriction as well as a very visible disfigurement to my beautiful curly locks.
About a year later, I had to take the plunge and transition to a wig. I had been trying to use cosmetic products to paint in brown to cover the peachy skin showing through, but it would rub off on my pillowcase and drip down my face if I sweated. My doctor finally said that shots were no longer an option for the amount of hair loss I experienced. Finally, and with the amazing support from my husband and his razor, we shaved off the remaining bits of my hair. It seemed like the worst case scenario had happened, and I had to face it head-on. (I now wish I had saved a curl just for sentimentality)
Why did I get a wig? I didn't consider being in public bald because I was training to be a psychologist. In therapy, the goal is to keep the focus on the client and not draw concern or attention towards yourself. So I chose a wig to avoid unnecessary attention and comments about myself and my health. However, even with a wig, people have suspicions. Like I was always told, you can't fake beautiful hair perfectly.
The most difficult part of switching to a wig was that there were no good curly styles that approximated my old hair. People said I should have fun and try a totally different style, but all I ever wanted was my mop of banana curls. Over time, I worked with a specialty shop to improve my style through curling tools, but suddenly I faced the impossible challenge people had told me about: you can't fake those curls. Boy, that's a lesson about inner beauty. Especially when people compliment me on my hair and say how lucky I am to be a redhead or to have curly hair... it is an ongoing lesson of awareness that beauty is sometimes not EVEN skin deep. And it shouldn't matter. But it still does.
Nowadays, I still wear my curly wigs, always in search of the more natural look. Now the challenge is that my hair looks "too perfect" a lot, so I'm always trying to make it look more natural. I completely ignore the rules when it comes to how I wear them. I use wig tape to affix them to my head and then I go swimming, hiking, and dancing. In fact, my favorite pastime is aerial silks, an acrobatic activity found in the circus where you hang from fabric in the air (often upside down or spinning). It wears them down faster, but it's worth it. I won't let a little wig stop me!
I have worked on being open about my alopecia. I find that it's a balance because many people don't know how to respond to this information if I volunteer it. It makes people uncomfortable. I leave it up to others to ask questions, and I tell them about it in pieces, as they want to know more.
Alopecia is a difficult illness in many ways. It is very visible to others. There is no real way to hide it perfectly. And baldness often makes people think of cancer treatment. Unlike cancer treatment, we are not sick. But we do suffer. And our hair might never grow back. It is an illness with significant psychological stress. Treatments are invasive and have significant side effects. My choice was to accept it and not risk my health for a cosmetic problem. But if there was a better treatment, one that actually targeted the root cause of the problem, I would do it in a heartbeat. To get my old curls back. To eliminate that one insecurity. To avoid costly wig purchases and maintenance. And to feel like me again.
Now I am sharing my full story because of this fundraiser, but also because it's important that we don't hide. There are thousands of us who need to come together to fight alopecia through research and campaigns like this one. It's an opportunity to raise awareness of alopecia on a major scale. Please help me fund this important campaign to cure this stressful illness.
If 100 people in my life donate just $5, I will reach my goal of $500. Please support this cause alongside me.
NATIONAL ALOPECIA AREATA FOUNDATION wrote -
Beginning September 14th and running through October 26th, in celebration of Alopecia Areata Awareness Month, NAAF is part of the Revlon Love 2016 Challenge!
This Challenge is a six-week fundraising competition launched by Revlon where organizations that support health causes compete for cash prize donations from Revlon. Over $1.4 Million will be given away in prize money to organizations participating in the Challenge. We're ready to raise as much money as we can! In addition, if we hit $50,000 by October 5th, we will be flown to NYC to pitch a collaboration between NAAF and Revlon to raise awareness and generate more funds.
Through this campaign, we have an opportunity to make a real impact in the lives of all those living with alopecia areata and their loved ones! Share your stories, your pictures and your videos! Together we can reduce the stigma of living with visible difference, increase awareness and raise funds for NAAF's programs of support, education and research for a cure.
Each week, we will award: 1) the fundraiser who has raised the most funds for that week, 2) the best photo submitted and posted and 3)the best video submitted and posted! Some of the super cool prizes will include:
- Invitation to be photographed by Rankin in NYC Oct 30th
- Skype meeting with one of NAAF’s top researchers
- Free Conference Registration for 2 in Miami, June 2017
- Hats and T-Shirts from AA Apparel
- Signed copy of Head On, Stories of Alopecia Areata by Deeann Callis Graham
- Invitation to attend NAAF Research Summit in NYC November 14&15, 2016
Through this Campaign, it is our goal all touched by it will come to see us…as we are on the inside.