A new-to-Montgomery, Alabama, family has started an alopecia support group that will hold its first meeting at the Prattville YMCA at 10 a.m. on March 11. The Montgomery Advertiser tells the story of the Air Force family who moved here in July so that 5-year-old Lilly’s dad, United States Air Force Maj. Jason Stack, could attend Air Command and Staff College.
Lilly suffers from an autoimmune skin disease called alopecia areata, which causes hair loss on the scalp, face and sometimes other parts of the body. According to the National Alopecia Areata Foundation the disease often appears in childhood as it did with Lilly, but it can develop in people of all ages, both sexes and all ethnic groups. It affects as many as 6.8 million people in the U.S. with a lifetime risk of 2.1 percent.
Alopecia is the medical term used to describe hair loss. Male pattern hair loss is also known as androgenic alopecia. Alopecia is also used to describe the drug-induced permanent hair loss that some people have suffered, such as many breast cancer and other cancer survivors who used the chemotherapy drug Taxotere, unaware that they were taking the risk that their hair might not grow back after treatment.
“People look and they have a sympathy look,” Connie Shatswell told Oklahoma’s News 9. “I look like I have cancer.” But she has been a cancer survivor for six years. She didn’t know why her hair never grew back.
Lilly and her parents struggled to find the cause of her hair loss as well. She was 3 at the time and they were living in Colorado. Her pediatrician, stumped, referred the family to Children’s Hospital Colorado where through process of elimination (the only way to identify the disease), she was eventually cleared of other potential causes such as Lupus or cancer and diagnosed with alopecia areata.
Unlike what people may think, Lilly is “going out and doing things,” Jason Stack said. Since moving to Montgomery Lilly has been busy. She’s started kindergarten, dancing and gymnastics, and she’s involved in Daisy and Girl Scout Troop 9141, which helped during the VVA’s annual Veterans Day flag-folding and flag-retirement ceremony.
The Montgomery Advertiser wrote, “….it’s hard to notice the baby-like wisps of hair covering Lilly’s head when her broad smile and giggles capture all the attention. Dressed in a purple floral dress, Lilly and sister Rose took advantage of their Presidents Day holiday from school by playing with dolls and pink stuffed animals before running out into the sunshine where Lilly landed several cartwheels on the front lawn.That same smile and energy caught the attention of local Vietnam veteran, Geoff Colt, who is a member of the Vietnam Veterans of American Central Alabama Chapter 607. The Vietnam veterans group impressed with Lilly presented her with an award at their January meeting.
“One little Daisy Scout caught my eye,” Colt said. “Five-year old Lilly really got my attention, for her illness, but more for her excitement, enthusiasm, and I fell in love with her smile.”
Since discovering that there was no support group for those with alopecia in the area, the Stacks have met five families who have children diagnosed with the same autoimmune disease. Their doctor in Birmingham, when informing them that none currently existed, suggested someone could start a support group.
“So that’s what we’re doing,” Christina said. “We took it as our calling to get one started.”
Montgomery Area Alopecia Areata Support Group
When – 10 a.m.-noon March 11, 2017
Where – YMCA in Prattville, 972 McQueen Smith Road S