What Everybody Ought to Know About Alopecia
She’s beautiful. Bold. Black. And Bald.–But not by choice. Meet Annette Moore, nicknamed “Crown Regal.” Afflicted with alopecia, she shares what it’s all about and how she copes. I had the honor to interview her up close and personal. Read. Learn. Educate others.
June: Hi, Annette! Thank you so much for your time and helping to inform us about a topic that a lot of people don’t know a lot about.
Annette: Thank you and my pleasure!
J: So what is alopecia exactly? What causes it?
A: Alopecia in its simplest terms means “bald”. The long answer is that the body’s autoimmune system has a mistaken signal that the hair on some parts or all parts of the body is a foreign object or disease and kills the hair at the follicle level.
J: Wow. Sort of like leukemia where the body starts attacking “good” blood cells thinking they are the enemy? But in this case, the body thinks the hair is the enemy and gets rid of it, literally.
A: Actually, that is a very good analogy…but I want to make it clear that unlike leukemia, alopecia is not life threatening.
J: Are there different types of alopecia? When did you first realize you had it? Are people born with it, or is it onset later in life?
A: There are many different types of alopecia. It’s broken down into a few main groups and then there are many sub groups.
Two main categories are: (1) Non-Scarring Alopecia, and (2) Scarring Alopecia.
Non-Scarring has potential for hair regrowth because the hair falls out at the follicle level. And sometimes it grows back and falls out again. The scarring may not necessarily mean that the surface of the scalp has scars on it, rather the scarring is inside the hair follicle. Once the scars are inside the hair follicle it does not allow hair to grow in the shaft. This type of scarring permanently damages the hair follicle which means the hair loss is permanent.
In June 2007 I was originally diagnosed with Scarring Alopecia. Scarring Alopecia is also known as “Central Centrifugal Cicatrical Alopecia” (CCCA).
The most common groups that are diagnosed, that most people know about are:
- AA (alopecia areata)
- AT (alopecia totalis) meaning a complete bald head), and I have
- AU (alopecia universalis) meaning complete loss of body hair
I am actually catagorized as having all three of those types of Alopecia. In different parts of my body. For example, in a very large area of my scalp I have the Scarring type. And in some quarter sized patches on other parts of my head I have the Non-Scarring type.
I have “no hair, no where!”
J: Do people experience it once, or is it reocurring? And is there any known cure or anything that helps this condition?
A: Some people may lose the hair once and it never grows back. Others lose their hair and can be are bald for 10 years or more when suddenly the hair decides to grow back. Alopecia is very unpredictable.
There is no cure for it; however, depending on the individual (e.g., progression of the disease, genetic factors, etc) there may be topical solutions, internal medications or injections that might slow down the progression of the disease. Or in some cases these treatments can excite the hair to grow back. But in all cases of hair regrowth, partial or full, the patient may lose the hair again.
J: Is it considered a disease?
A: Yes. But I like to look at alopecia as more of a social and emotional disease rather than a medical one. Because someone with Alopecia is not “sick” in the traditional sense. The social and emotional devastation one can experience can be overwhelming.
J: Especially for women. Hair is often thought to be a woman’s “crown.” Especially African American women. We invest a lot of time and even money into our hair.
The body is fascinating. I must admit that I never heard Alopecia until learning of it from you. How did you deal with the news initially? How do you cope now?
A: In answer to your question about coping, I couldn’t cope and at that time there wasn’t a whole lot of information about alopecia out there. Especially not for women of color. I fell into a deep depression. I thought I needed to hide my dirty little secret. I go into a little more detail about that in the video.
EDITOR’S NOTE: You can learn more about how Annette coped and is currently coping with this ailment by watching the video below! She also is very active in being/providing a support system for other women (of all ages and races) who are also dealing with Alopecia.
J: Thank you again for your time and sharing with us today!
A: Thank you as well!
Documentary Featuring Annette’s Alopecia Experience
Above, watch a playlist of three (3) YouTube videos that feature Annette for a documentary at a Film Festival next year (name of Film Festival pending).
Question: Did you know about Alopecia before today? Do you know someone who may suffer from this condition? What are your thoughts of the below interview and video cilps? You may leave a comment by clicking here.