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Lisa’s letter: ‘This is the worst thing that’s ever happened to me.’

Dear Scientist,

When I’m at my worst, my mother will say, “I wished this happened to me and not you.” But I wouldn’t want anyone in my family to experience this. This is the worst thing that’s ever happened to me.

I’ve been living with Alopecia universalis (AU) for over 11 years now. I grew up with a full head of hair, but there were always signs that things would end up the way they did. I always had a patch of hair missing at the back of my neck, I could count the number of hairs I had growing on my arms and legs on one hand, and I would have small sections of eyelashes that would fall out, but always came back again.

Until 11 years ago when my hair started thinning all over. In a few short months, it was gone. It started to grow back once I saw a doctor. I thought, “Great, this is what should happen: You go to a doctor, get treatment, and you’ll return to the way you were before.”  For 6 months it did grow back. But then it started to fall out again.

Lisa Gregory adjusts her wig in a mirror at her Worcester home

This has happened to me more than once, and it’s just as devastating the third and fourth time. I had high hopes in the beginning when my hair grew back. I could get back to my life. I could get rid of the wig, the pills, the creams. I figured once my hair grew back I could re-live my life, like a do-over.

For the first five years I dealt with Alopecia myself, not talking to anyone about my struggles other than immediate family. Overwhelmed, I finally made the decision to go to a support group. Seeing others so free and open shocked me as a newly bald person. For the next year I never missed a meeting, and I cried at every meeting, too. It’s been five years, and now I’m leading the group.

Gregory leads the conversation at a recent meeting of her support group

Two years ago, my group was involved in a photoshoot that was organized by the National Alopecia Areata Foundation. That was the first time I exposed my naked head to be photographed, and, let me tell you, it’s a big deal when you’ve never done it before. I was sent a portrait by the photographer and was amazed at what I saw: I looked better bald than I did with a wig. The fact that I had this thought was amazing.  

I have grown more confident, and I’ve gone from simply telling others I have Alopecia to educating them about what it is and how it affects me. I will fight for this in whatever way I can, whether it be leading the support group, taking part in awareness events, or taking any new treatments that come along. In some ways, this has made me stronger. I will not give up hope that someday there will be a cure that will stick once and for all.

Sincerely,

Lisa Gregory

This content was produced by Boston GlobeMedia's BG BrandLab in collaboration with the advertiser. The news and editorial departments of The Boston Globe had no role in its production or display.