I am a 35 year-old woman and I am bald.
Like millions of Americans (4.5 million, to be exact), I suffer from an auto-immune condition known as alopecia. To some, alopecia is a hair loss disorder that effects small patches on their scalp hair, or eyebrows, and can be treated with steroid injections. For millions of Americans, however, this is a disfiguring disorder that sometimes means full and permanent hair loss for the rest of their lives.
Upon returning from a two-week trip to Ireland in the spring of 1995, I started losing my hair, first in strands and then in massive amounts. I went from wearing a baseball cap to hide the loss on a Friday to wearing a bandana on a Monday, because the hair loss was so significant in just those few days.
While I reached out to numerous doctors, including infectious disease doctors, internists, specialists and finally, dermatologists, no one could give me definitive answer as to why my hair was falling out and if it would ever come back. And then I started to lose ALL of my hair. First my eyebrows, then arm and leg hair, pubic hair, and eyelashes. To this day, 12 years later, I only have ever grown back a minimal amount of hair, and have regrown nothing on my head or face.
This has been a devastating, life altering thing to deal with. And I’m not alone. By sharing our stories, we can share the affect this condition has on people, what life is like when your identity changes and friends to see at reunions or family members you see at weddings don’t know who you are. The way you are scene by society changes; the person interviewing you for a job thinks you have cancer (if, you are like me, someone who does not wear a wig); etc.
I like, so many other people living with alopecia, have years of stories, about their experiences with this disorder, disease, condition. I hope to share those stories with you some time. Some of funny, others are interesting, the remedies I’ve tried (once put habanero peppers on my head, an old wives tale, and have had as many as 100 needle sticks with steroids to promote growth) have been painful and useless, the doctors I work with are mystified but hopeful. There is no cause, and there is no cure. But maybe by telling our stories, people living with this disorder can again find some hope and some understanding from those around them, their co-workers, their sisters, and their mothers.
