At the hotel that I was staying at in Washington D.C., there was an Alopecia conference going on, and when I tell you that these people are inspiring, I mean truly inspiring. That is what my article is about this week, it’s not about how pretty the art in the museums are, how upset my grandmother was about not being able to get a tour of the White House, or how the hotel messed up our room, it is about the men, women, and children that came to this hotel with Alopecia.
What is Alopecia?
Alopecia is an autoimmune disease in which your immune system, essentially your body, attacks your hair follicles, causing hair loss. Most of the people at the conference do not have any hair, no eyebrows, no eyelashes, nothing, but these people are truly beautiful. It truly gets to me because I use my hair as my security blanket, with it being so long and thick and beautiful, that the thought of one day waking up to see that patches are falling out, and then one day for it all to just be gone makes me want to ball my eyes out, and then you see these people who have had exactly that happen.
Some of them have had Alopecia their entire live, one woman I met named Cindiis now forty years old and lost all of her hair at the age of two and a half years old. She showed us all a photo of her at age 2, she said that her mom had noticed that she was losing hair and wanted to get a photo of her before everything was gone, although she had no idea what was going on. Another woman I met named Cheryl Wright lost all of her hair only a year and a half ago while in her late forties, and her world was practically shattered by it. Cheryl’s father was a barber, her mother was a hairdresser and she herself was a hairdresser, she loved her hair, took pride in it. Cheryl had the early stages of Alopecia when you only have patches missing that would grow back and fall out again and again, for years before she lost all of her hair, during those years she would do everything she could to cover the patches. When she lost all of her hair Cheryl told us she didn’t even want to leave her house, she was broken. She says that after she finally was able to leave her home that she only wore a wig once, that after wearing that wig she realized that she spent most of her life covering up her Alopecia and that she wasn’t going to do it anymore, let alone whilst being uncomfortable with a heat magnet on her head. These women are inspirational.
I also met a young woman with Alopecia named Megan and her boyfriend. She said that her boyfriend is the one who gets more offended by the staring than she does. She told us a story of how while working one night (they are both bartenders at the same bar) a drunk man came up to her and just started rubbing her head, literally didn’t say a word to her, just started rubbing her head. Other stories were of how people would give them lectures whenever they would see them smoking a cigarette, automatically assuming that they have cancer.
Left to right: my mother, other people we met at the hotel Rob and Susan who were there for the 12 hours of prayer at the National Mall, my grandmother, and Megan
I am saying this to bring awareness to them, not every person who has no hair has cancer, they could, like these men and women, have Alopecia, and instead of immediately staring in a rude way, even if unintentional, treat them like normal people, like people with hair if that’s how you want to look at it. Because as Sheryltold me when she is asked if she has cancer she is both offended and sad. Offensive because why do people immediately assume that because they have no hair that they have cancer. Sad because they get to say no to that question. The young woman Megan told me that her boyfriend gets more angered by the questions and comments than she does, and me, being a sister to a person who is special needs, can understand where he is coming from.
I have also talked to the parents of children with Alopecia, and when I tell you that these kids are the some of the most inspiring people I have ever met, I truly mean it. One mother I met named Kristen has a twelve year old daughter with Alopecia named Heather, who also has an identical twin who doesn’t have Alopecia. Kristen told me that one day while out in the garden Heather told her that she was afraid that she wouldn’t ever find a husband because she didn’t have hair, hearing that broke my heart. I cried a little after she told us because for a twelve year old girl to think that because she doesn’t have hair that no one will want to marry her makes me hate this society that we live in. Heather is a beautiful girl inside and out and I hope that one day she realizes that you don’t need any hair to be beautiful or to be loved, and that being different is the most beautiful thing in the world along with an amazing personality. I also talked to another mom, Becky, whose son is eighteen years old. Becky told us that her son wasn’t really affected by losing all of his hair on his head, that it affected her more than it affected him. But that when her son lost his beard it really sank in for him.
Left to right: another man there for the 12 hours of prayer, Cindi, Sheryl, my mom, me, my grandmother, Kristen
I was lucky enough to be allowed to attend the dance party the last night of the conference, it was 80's theme. I spent the time dancing with the cutest little 5 year old girl who's name I didn't quite catch, as well as dancing with Sheryl and another person I met who wasn't apart of the Alopecia conference but like me was invited to go, Tyler. Both Tyler and I thought of these people as truly beautiful and inspiring having to go through such a traumatizing thing. The little girl I mentioned before was the BEST dancer I have ever seen as well, I could barely keep up.
Tyler and Sheryl at the dance.
People with Alopecia can also suffer from psoriasis, arthritis, lupus, and multiple other autoimmune diseases. I am writing this because I want people to know about Alopecia, to learn the same things I did over the last 4 days of being around these amazing people. In all honesty, I think I had the best time of my life this weekend because I was surrounded by amazing people, good weather, and learned about so many things.
