‘As strong as I was for my three little girls at the time, inside I was breaking.’

Margaret Staib, Greenlawn

“Seventeen years ago, I found a small bald spot at the nape of my neck. Then another one developed right near it and merged into one softball-sized bald spot. My hair was falling out slowly like tinsel.

“After a dermatologist diagnosed it as alopecia, I dove into research. My sister-in-law had recently gone through breast cancer, and what was really supportive to her was a breast cancer support group.

“After years of getting steroid shots, experimental treatments and going back and forth to the city, I finally said enough: It’s an autoimmune disease, and presently there is no cure. I decided to stop the medical route because nothing was working and went for the emotional support route. I asked my dermatologist why there wasn’t a support group here on Long Island. He said, ‘You have to have a medical advisor in order to start one, so if you would like me to be your medical advisor, I’ll support you, and you could start one.’

I knew if I was breaking, there were other people on Long Island who were breaking. So, I started the group, and wow, what a difference.

“Alopecia can happen sometimes when a tragic life event triggers your immune system. My dad had been in the hospital for a month, and they couldn’t figure out what was wrong with him. He couldn’t take it anymore, and he ripped his own trach tube on New Year’s Day and died.

“February is when I found my first spot. I craved to be around other people who understood what I was going through. As strong as I was for my three little girls at the time, inside I was breaking. I knew if I was breaking, there were other people on Long Island who were breaking. So, I started the group, and wow, what a difference. It’s like anything that you’re going through in life, and you meet somebody else who can commiserate; it’s life changing.

“All these people found out about the group through word of mouth. Two of the girls who started in the group as teenagers are now married, and one has a baby. The group is free, and we meet in a small room at Harborfields library in Greenlawn.

“What still gets me is, there are so many dermatologists on Long Island who treat alopecia and don’t tell anybody about the support group. I’ve only ever had one person referred by a doctor’s office. She was crying and the nurse came up and whispered to her, ‘There’s this support group on Long Island.’ That’s how she found me.”

Interviewed by Hannah Fusaro