HEATHER’S STORY

Heather recalls vividly how she felt when she first noticed her hair loss and gathered the strength to do something about it. “I remember that time period as one of slow terror.”

Heather was in her early 30s, in the middle of moving to a new city and starting business school to earn her MBA when she realized something was wrong. “I had a spectacular short Afro, and one day I started to comb my hair and felt air. There were quarter- and dime-shaped bald spaces on my head.” Heather knew there was something wrong, and for two months, she avoided looking at herself in the mirror.

Finally, Heather sent pictures of her bald patches to her mother, her best friend and her aunt, with a message: “Something is wrong with me.” When they replied with messages of love and support, Heather made an appointment to see a dermatologist. Her diagnosis: alopecia areata.

Acceptance
Heather tried some hair and scalp treatments that she hoped would work. But within two months, all of her hair was gone, including her eyebrows and eyelashes.

“I wore a wig for a few months, but one hot day, I was running late for work and forgot my wig.” She says her colleagues were very complimentary and supportive. “I have been bald ever since.”

Living with the Disease
Even with her decision to be a bald woman, alopecia areata affects Heather’s daily life. “Every day, I have to put my eyebrows on. I make sure I wear earrings, because without them, I could be mistaken for a man. Sometimes, wispy baby hairs grow, and I shave my head every week or two.”

Heather sees the impact to her self-esteem as being the biggest challenge she has overcome.

“It’s not a fashion choice, it’s alopecia areata. My identity has shifted to include alopecia areata. How do I want to show up in the world? I had to decide. Now people assume I am brassy and strong, thinking it takes courage to cut your hair off. Those are great qualities. This is how I choose to be seen.”

Though Heather knows there are new treatments in development for this autoimmune disease, she says, “I’m not currently taking any medication for alopecia areata, and I show up in the world as a bald woman.” Even so, she is encouraged and relieved that alopecia areata is attracting more attention and research.

For anyone who is earlier in their alopecia areata journey, Heather says “You are not alone. There is a rich, vibrant and beautiful life beyond alopecia areata. You can have this disease, but it’s just a part of you, not all of you. I’m a person who has alopecia areata, not a patient. I know you will see many people who don’t look like you, but there is not just one way to be beautiful. Include yourself in the term beautiful!”

STEPHANIE’S STORY

Stephanie lost everything when her Louisiana town was completely wiped out by Hurricane Katrina in 2005. She survived, and she and her husband moved to higher ground and started over in a new town. Then, two years later, when she was 31, she found a little bald spot on her head. “I had crazy thick hair and didn’t think much of it,” Stephanie says. “I went to the doctor and found out I had 14 bald spots I didn’t even know about, hidden in all that hair.” Stephanie’s diagnosis: alopecia areata.

Stephanie was surprised to learn that alopecia areata is an autoimmune disease. “I have two degrees in the medical field and knew about autoimmune diseases, but I didn’t know alopecia areata was one until I was diagnosed and researched it.”

Acceptance
For four years, Stephanie’s alopecia areata was very unpredictable. She tried treatments with some hair regrowth, but then her hair started falling out quickly. “I ended up with only one patch of hair on my head. My husband shaved it off for me. It was a very intense moment, and I cried at the finality of it,” Stephanie says. “But it was also liberating, to be free of it. Then, I lost my eyebrows and eyelashes as well.”

Emotionally, she still struggled with depression and coping with alopecia areata. This changed when an interaction with one of her patients helped her come to terms with her disease. (Stephanie’s job is in the health care field.)

“After about six months into being completely bald, one of my patients came in for a test on a day when I was thinking about an expensive wig I wanted to buy. She told me that she had cancer and had been given three months to live.” Stephanie says this was a significant moment in her life, calling it her turning point into acceptance. “I realized that although I do not have hair, I get to live my life.”

Now, Stephanie says she appreciates her amazing family and friends (including her patient, who is a cancer survivor), co-workers, and a great support system. “I’m in a great place.”

Living with the Disease
Stephanie has been living with alopecia areata since 2007. She has some hair regrowth now, but she knows that could change any day, and her hair could fall out again.

Stephanie has adapted to life with her physical symptoms of alopecia areata. Her scalp is very sore when hair falls out or grows back, and without her eyelashes, she finds that her eyes get irritated and dry more easily, especially in the winter.

Even though she describes herself as social and outgoing, Stephanie still has some anxiety when going to a new place and meeting new people. “I love meeting new people, but there is that little sense of hesitation: What will they say? Will they ask me questions? Will they stare?”

Stephanie says it was important for her to share her story because she wants to help others who have alopecia areata and let them know someone else is going through the same thing with the disease.

Stephanie hopes for more awareness and more research for alopecia areata. “It’s encouraging that so much research is on the horizon. Alopecia areata is starting to get a big spotlight – keep the faith!”