Greenlawn woman Margaret Staib creates support group for alopecia

Margaret Staib was diagnosed with alopecia, an autoimmune disease that causes hair loss, seven years ago. After losing most of the hair on her head, she dons wigs and scarves and clings to her eyebrows and eyelashes, fearful for the day she’ll lose those, too.

Staib, 45, of Greenlawn, said she didn’t know anything about the disease until she had it.

“It began with small bald spots on the back of my head,” she said. “It was like tinsel falling out in the shower.”

Staib spent years trying to grow her hair back, taking “miracle” drugs, steroid shots to her head, using creams that made her scalp burn and bleed, and even acupuncture.

Finally, after years of trying to find a cure, Staib realized the best thing she could do was connect to people in the same situation. After failing to find support groups on Long Island, she formed her own group in 2009. It meets monthly at the Harborfields Public Library in Greenlawn.

“I needed to meet another person who had this, so I didn’t feel like the only bald chick on Long Island,” Staib said. “Everyone’s journey is different and we’ve become like family.”

At Tuesday night’s support group, she was joined by two men and 13 women with alopecia, or whose child was diagnosed with it.

Staib explained that not all treatments help; many, like steroids, have only made it worse. Some women in the group lost their hair years ago and have since grown it back, but expect to lose it again.

“We aren’t dying, but this is emotionally painful,” said Staib, wife and mother of three, who has thus far raised $4,500 for the Alopecia Foundation. “You have your ups and downs, but it’s nice to know these people get your downs.”

With tears flowing and clumps of tissues collecting, if anything, the session provided an opportunity for venting.

Lori Storc attended her first meeting Tuesday, holding tissues in her hands as she told her story.

Her 2-year-old daughter, Mataya, a name that means “gift of God” in Italian, was diagnosed with alopecia Feb. 16. Though she knew the group wouldn’t solve the issue, she said it allowed her to walk away equipped with the tools to cope.

“When I’d pick her up, clumps of hair was left on her pillow,” said Storc, of Ronkonkoma. “It’s devastating. I just want her life to be perfect and for her to always feel 10 feet tall. It just breaks my heart that someday I’ll have to explain to her why she doesn’t have hair.”

“She will be a strong girl,” said Jen Pelini, who has been a part of the group for two years and was also diagnosed with alopecia as a baby.

“You just learn to live without it,” said Pelini, 38, of Merrick. In 2009, with her thin hair continuing to slowly fall out, she took a razor to it and has now been wearing wigs.

“It was a mental game watching the hairs fall out,” Pelini said. “I wouldn’t have been able to get over the hump without coming to this group. You just can’t let it get you down.”

The group has grown to 20 active members and has not only changed their lives for the better, but also the person who started it all.

“To this day, there is no cure,” Staib said. “But it has helped us all to know there are others that feel the same way and is going through it with us. This group has helped me in more ways than one. I am truly blessed to know this group of people. We’re like family.”

For more information on the group, contact Staib at staiber@optonline.net.