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Alopecia Areata: The shame and embarrassment of this disease devastates the lives of too many women and girls when treatments do not work. Since 2007 Bald Girls Do Lunch has connected with over 3,000 to restore self-confidence and conquer isolation. With requests for meet-ups in every state and beyond the USA, Bald Girls is answering the plea for women to find others for community and support. From intimate groups to style workshops to restoring her looks, BGDL puts women on the track to normalcy and living well with this disease. Learn more...





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Full Interview with Mavis Jackson

Full Interview with Mavis Jackson: “Life is Good Living with Alopecia”

Interview by Joanna Zelman. Ms. Zelman is the Green Editor for The Huffington Post and author of Uncle Morty’s Funeral

 

Mavis Jackson is a woman whose laughter translates across phone lines. Born and raised in Houston, Texas, she is the proud mother of five children and eight grandchildren (including two sets of twins!) Currently a chemical dependency counselor, Mavis was living her dream job when she was diagnosed with alopecia areata:

 

I’m very happy. I know now that I’m living my purpose. Because I love what I do, I don’t feel like I work a day in my life. The real payoff for me is when I see a person get healthy from what I do. I know how important support is in maintaining any type of change you make in life, especially one that involves a behavior you’ve been engaged in for so long. So the rewards are unbelievable. It’s just a wonderful thing. An amazing thing… to feel like you made a difference in somebody’s life.

 

How did you first get involved with Bald Girls Do Lunch?

 

I went to my first Bald Girls Do Lunch luncheon in January of 2008 in Manhattan, New York. It was my first luncheon, it was my first time meeting Thea, and it was like I knew I was where I was supposed to be. It’s like when you join a group and go, “Oh yeah, this is where I belong.” That’s how I felt.

 

And I’d never been to New York in my entire life. It was a fantastic trip. And that was my first experience with Bald Girls Do Lunch.

 

Was it uncomfortable at all or did you immediately feel at ease?

 

Because I had talked to Thea beforehand, I was comfortable. I got a cab from the airport straight to the restaurant, so I walked in with my suitcase, rolling it behind me, and they were so nice they took it and put it to the side. You know, I think God gave me the gift of hospitality and the gift of friendship. I’m the type of person where it seems like I’ve never met a stranger. Does that make sense? I meet people and it’s like a connection is instant.

 

And when you come around people that you feel you have something in common with – it was almost an automatic feeling of comfort that came over me. Oh I had a ball! There was a little nervousness at first, of course, because it was new, but it didn’t last long at all. Trust me. It didn’t last long at all. And Thea has the kind of personality where she makes you feel comfortable.

 

I had so much fun that first time. I have so much fun each time that I’ve ever been with them. I’m there for help but I’m also there to help others. It fits. It fits in with my life, it fits in with what I do, it fits in with who I am.

 

And how have you stayed involved with Bald Girls Do Lunch since then?

 

I went to that luncheon and then Thea called me and said, “we’ve been invited to the Today Show and I told them Mavis has got to be there!”

 

I traveled to Oak Brook, Illinois for the taping of the Today Show. And that was a fantastic experience as well. I got my makeup professionally done at Nordstrom’s, and I felt like a movie star.

 

When did you first learn that you had alopecia?

 

I first saw evidence of it in 2007. At the time I was wearing my hair braided, which means I had extra hair added to it; I had long braids. And when I got ready to take the braids out, I lifted up part of them, and I saw this big bald spot in the front my head! And I looked at it and I said, “what in the world?” And I know people that had experienced their hair coming out as a result of what the braids did, so that was my first inclination. It was like, “Oh my God, they’ve braided my hair too tight and they’ve taken my hair out with it!” Oh I was upset; I called the shop where I had it done! [laughs]

 

Once I calmed down and looked at it again, I saw that it was a huge spot with no root hair. And I knew that if the braids took the hair out, it would leave a root. But there was no root! And so I just kind of went on. I took the braids out, I covered it up, and I just went on. Because at that time, I was working. I was getting ready to take the LCDC [Licensed Chemical Dependency Counselor] exam, and you know, I just didn’t have time to deal with whatever it was that would clear it up and be okay. So I just kept going and going… and I’m not taking this serious, I’m not taking the time to really examine it. And I kept going.

 

So finally I took the exam, it was then about August. And I said, “okay, I’m gonna have a doctor look at me.” Because it’d gotten to the point that I could no longer cover up the spot with my hair. Because my hair would then come out. I’d comb it – I’d take a brush and a comb, and it’d fall out! So I went to the doctor, and she immediately looked at my head and said, “It’s alopecia.” I said “what is that?” Then I said “Why?” And she said, “We don’t know.”

 

And now, mind you, years ago, I went to cosmetology school, so it was not totally foreign to me. I knew about alopecia, from when we studied it in school, but it had been so long, I didn’t remember the information behind it, the cause or any of that. So, she got down her medical book and she showed it to me and it made perfect sense, because it described what was going on with my hair! And again, she said she didn’t know why, they don’t know why… so she referred me to a dermatologist.

 

By the time she referred me to the dermatologist, I had gotten a wig. I’d never worn a wig ever ever before in my life. I’d added extensions, I’d added extra hair, but a wig – never. So I went and bought a wig, and it was so uncomfortable to me. And so, by the time I went to the dermatologist, I’d started wearing scarves.

The dermatologist gave me the same diagnosis. She said “alopecia areata.” And she told me, “I’ve never seen a person with this large an area of alopecia.” And she explained that they believe the immune system detaches these hair follicles by mistake. And I said, “ok.” I mean what can you say – “by mistake?” Because the same thing that protects you from germs…it evidently makes the mistake of thinking your hair follicles are germs and it attacks them and makes your hair fall out! She prescribed me some of the same creams that the doctor prescribed for me to use on the spot, and then she told me about the injections- well let me tell you, after one injection, I did not want anymore of those.

 

Why?

 

Because have you ever had someone stick you in your head with a needle?

 

No!

 

So I got one injection and I said, “no, that’s it for that.” Ok. So then I was on my journey to living with alopecia.

 

I went to the Internet and I looked up alopecia areata to get a better understanding of what was going on with me, and then I proceeded to look at support groups. And in my research for support groups, I found Bald Girls Do Lunch.

 

But in October of 2007, I was a wreck. The one thing that I teach clients is that when you suffer a loss, you have to allow yourself time to grieve that loss. I had not practiced what I preach, and so by October, trying to deal with work, trying to deal with the alopecia, I was a wreck. I identified that, and I took a 30-day leave of absence from my job. I took 30 days and went away. I took time to grieve my loss, because I had suffered a loss. And so over the course of that 30 days I hooked up with Bald Girls Do Lunch. … it helped me so much to know I was not alone. And that is the importance of having support. That’s the main reason to have support. To know that you’re not alone.

 

By November of 2007, I decided to go and get my head shaved for the first time. I went to a barbershop – [the barber] was very very understanding and he had the shop cleared out when he got ready to shave my head. And my daughter was there with me to hold my hand, and it was a very very emotional moment for me. Very emotional… And I shave my head myself these days! [laughs] I shave my head myself these days.

 

I allowed myself to heal, and once I did that, I got stronger and stronger. I got more accepting of it, and I had people telling me how beautiful I looked without the hair! [laughs] How God gave me a perfectly shaved head. And so from there, everything worked great.

 

What was your family’s reaction? It sounds like you have a pretty strong support system.

 

Oh yes I do. Especially my children, my children have always been my biggest support system… My children have been there for me, and they continue to be there for me. And my other family as well.

 

Now let me tell you the story of how I came out to my family. Because I hadn’t talked to them about the alopecia. I’d briefly mentioned it to my mother, something like, “yeah, there’s something going on with my hair, it’s been coming out, but I’m going to the doctor, I’m going to find out, dah dah dah.” And so she’d said, “well just take care of yourself.” I had a bout of liver failure in 2004, and I had to be taken by helicopter to Houston, and thank God my body beat it. But my mother was like, “Well maybe it’s because you’ve been taking so much medication from your past sickness.”

 

So, remember I went and got my head shaved in November. Inn December 2007, on Christmas day, we were all at my mom’s.

 

I had gone and taken some professional photographs at this little studio in the mall. They came out very well, I was very happy with how they looked. I took them bald – they were the first pictures I ever took bald. And so I took wallet size pictures and put them in cards. I waited until everyone was sitting in the family room, then I started to pass them out and said, “Please wait, I want you all to open them at the same time.” I passed them out, and they waited, and I said, “Okay, open them.” And they opened them.

 

The initial responses were amazing. You know, I got an “oh” and then somebody else said “aww” and somebody else was like “ohhh” and it was the “oh’s” and the “ahs” and the “ooo’s.”

 

And then it was my mother. She said, “You look like a model.” [laughs] That for me was like confirmation – okay, it’s okay. You know, if my mom thinks I look like a model, I don’t care what other people think. [laughs]

 

My daughter – I don’t know how long, how many months, but every time she’d look at me, she’d go, “I am so proud of you. For you to be able to accept and proudly wear a bald head. I am so proud of you.” She said that for the longest time.

 

And my oldest grandson, he was talking to one of his friends, and he goes, “yeah man, my grandmother doesn’t have any hair, she has this thing called ‘alopecia Henrietta.’ We said, “wait a minute!” So we taught him how to pronounce it correctly. And you know, my grandchildren, they know and accept me, they love me and so they accept any part of me. And it’s not a problem. It’s not an issue. It’s not even something that’s a part of the conversation anymore. It’s just part of who I am.

 

Looking forward with Bald Girls Do Lunch, what is your dream for the organization?

 

Oh my gosh, I would love to see Bald Girls Do Lunch just be a worldwide, world wide organization for women with alopecia. You see, because [Thea] created it specifically for women with alopecia, that makes it – what we call in counseling – a “special population.” This organization is specifically designed for women with alopecia, because women with alopecia have a special, I guess you could say, need, that can only be met with talking to other women about it. It’s also a great start getting from state to state, before long it’ll be in every state of the United States, and then after that I’d like to see it travel all over the world, and carry the message that women with alopecia areata are not alone. They are here for you, and life is good. Living with alopecia.

 

What are some of the challenges of being specifically a woman with alopecia?

 

Being told all your life that your hair is your crowning glory, and then you lose it. That can have an effect on your self-esteem. That can have an affect on how you feel about yourself, and create shame and embarrassment.

 

Of course, going out in public for the first time with nothing on my head, it used to be kind of funny to me at first, because people looked, and the first thing that people assume is that you have cancer. That’s the first thing people assume when they see you bald, is that you have cancer.

 

People – people are going to be people. And when I go out in public without anything on my head… I see people with the side glances, and some of them don’t care, but then some of them try to sneak a peak, and then they turn their heads…and of course children. Because children are children.

 

The funniest experience I had with a child was when I went to Puerto Rico for my son to get married. And my oldest son [Edward] brought his girlfriend, and she had a little girl, who was three years old. I was waiting on her response, her reaction, I was waiting for it, because I knew it was going to be priceless. And she looked to her mother, and I heard her try to whisper, and she turns to her mother, and goes, “[Edward’s] mom is a boy!” And her mom said, “no she’s not.” And the girl says, “Yes she is, she doesn’t have any hair, like a boy!” [laughs]

 

Living with it, and being in acceptance and being ok with myself, lets me take things like that and find the humor in it. See, because if I didn’t, if I wasn’t ok with who I am, with or without hair, those kind of things would be hurtful.

 

I had a woman in the mall walk up to me and say, “You know, everybody can’t wear that, but you are wearing that sister,” and I was like, “Well, thank you!” [laughs] Things like that are what build you up. That way, when things happen that aren’t quite so funny, they don’t just totally tear you down. You accept that it’s coming along with the territory. My experience has been growing, enlightening, and sometimes funny.