Beautiful Just As She Is
Local mother is on a mission to educate her community
When Gabby Gertner was born four years ago, she had a full head of auburn hair, recalls her mother, Monique Erdos-Gertner, of Reisterstown. “There was so much of it. I used to put it up in barrettes.” But when Gabby was about 9 1⁄2 months old, her mother noticed a quarter-sized, bald patch on one side of her baby’s scalp. “It was weird. I had seen this Oprah show about alopecia 15 years ago, and somehow it stuck in my mind. When I took Gabby to the doctor, and I suggested the diagnosis, he looked at me like I was ridiculous. He said Gabby’s bald spot was caused by sleeping on that side of her head. But after that, I started noticing hair everywhere — on her hats and pillowcases. When I would gently tug on it, it would just come out,” says Erdos-Gertner. “So I took her to my dermatologist, who took one look at her and immediately said ‘alopecia.’” Wanting another opinion, Erdos-Gertner took Gabby to see Bernard Cohen, director of pediatric dermatology at Johns Hopkins Hospital. Dr. Cohen confirmed the diagnosis.
Alopecia areata is a common autoimmune condition that affects two percent of the population and approximately 5 million people in the U.S. According to the National Alopecia Areata Foundation, “It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).” The condition, says NAAF, is unpredictable and cyclical; hair can fall out and grow back at any time. Alopecia does have a hereditary component, and one in five people with the condition has a family member who also has alopecia. As in Gabby’s case, other family members may not have alopecia, but they may suffer from other autoimmune disorders. Alopecia does not impact any other organs and individuals with alopecia are not ill. There is no cure for alopecia, but there are some treatments that may stimulate hair growth.
By the time Gabby was a year old, she had lost all of her hair. At age 21⁄2, her eyebrows and lashes grew back, but in the last 18 months, they have fallen out and grown back again. Now entering her last year of preschool at the Owings Mills JCC, Gabby is beginning to ask questions about her condition. Soon, says Erdos-Gertner, Gabby will need to know how to respond to questions from others. “Recently I sat her down and told her what she can say when people ask about her hair. ‘Tell them everyone is different,’ I said. ‘This is how God made me.’ I also told her that she can tell people she is ‘allergic to her hair.’”
“Gabby’s very happy and outgoing,” says her mother, who also has a 3-month-old daughter, “but once in a while she’ll say things like, ‘I want hair like you.’” Sometimes Gabby wears a hat; at other times, she goes without one. Her mother recently bought Gabby an inexpensive wig, but at present Erdos-Gertner says, “Gabby just plays around with it. When she really wants a wig, I’ll buy her a good one. But I’ll let her guide me. I’m hoping she’ll be strong enough to be comfortable just as she is. The wig should be an accessory, not a necessity.”
Erdos-Gertner says she has internalized these parenting attitudes from her involvement with CAP, The Children’s Alopecia Project. She discovered the organization while researching alopecia soon after Gabby was diagnosed. “CAP is amazing. The people who founded it have a daughter with alopecia. They are a huge support,” says Erdos-Gertner. CAP, a national organization, sponsors support groups, camps, outings, and conventions where parents can learn about the condition and children can be around others with alopecia. The nonprofit also raises money for research, increases awareness and provides professional support for families affected by alopecia. Erdos-Gertner, her husband Eric, and Gabby all participate in the local CAP chapter.
When Gabby was first diagnosed and Erdos-Gertner found CAP, she learned about the five stages of grief experienced after a loss or trauma. “The first step is anger, and I was angry at the beginning because I couldn’t solve it or stop the alopecia,” she says. Anger, she learned, is followed by denial, sadness, the dissipation of sadness and finally, acceptance.
One of the most difficult parts of having a child with alopecia, says Erdos-Gertner, is the reactions of strangers. “There are lots of different stares — there’s gawking, pity, curiosity and confusion. The staring used to make me angry, but then I realized my reaction would affect Gabby. If I act angry, she’ll be angry.” Nowadays, Erdos-Gertner reacts by educating others about Gabby’s condition. A common misconception when people see Gabby is their assumption that she has cancer and has lost her hair as a result of chemotherapy. So, when she sees strangers staring at Gabby, Erdos-Gertner explains that Gabby doesn’t have cancer. “I’m a walking commercial. I tell them she has a condition that makes her hair fall out. She’s perfectly healthy. Education is everything.”
When Gabby began attending the JCC’s Early Childhood Education Center, her mother made a point of educating the parents and teachers about alopecia. “I gave out pictures of Gabby and asked the parents to show them to their children before the school year began. I asked them to explain Gabby’s condition and to teach their children kindness and compassion. Tell them, ‘Everyone’s different. She’s beautiful just as she is.’” Erdos-Gertner’s efforts have paid off. The parents and teachers at the JCC have been “fabulous” and Gabby loves school. Next year, Gabby will be in kindergarten, attending Chatsworth Elementary School where her mother is a teacher. She’ll also begin religious school at Temple Oheb Shalom. Erdos-Gertner is hopeful that people at school, at synagogue and elsewhere in the community are responsive to her message of kindness and tolerance. “This is where Gabby will grow up. I want her to feel loved and accepted.”
For more information about alopecia and other auto-immune diseases:
Childrens Alopecia Project (CAPS) childrensalopeciaproject.org
National Alopecia Areata Foundation (NAAF) naaf.org
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) niams.nih.gov
American Hair Loss Association americanhairloss.org