I have permanent hair loss, also called Alopecia Universalis. That doesn’t mean it will never grow back (it has), simply that it will never stop falling out. Once an Alopecian, always an Alopecian…
It took a lot of doctor’s appointments to finally arrive at that diagnosis and trust me, learning that I had a permanent hair loss disease was devastating, but it was also a giant relief. Hair loss IS devastating, but hair loss with no confirmed cause is even more devastating and completely unnerving.
There are so many possible causes of hair loss, many of them very difficult to conclusively diagnosis, so women and girls with unexplained hair loss seem to greatly out-number women and girls with diagnosed hair loss conditions. Browse any women’s hair loss website or forum and you will find countless numbers of women and girls writing and reaching out to others in hopes of finding someone with their exact symptoms AND with a name and diagnosis for their hair loss. Dismissed by one doctor after another, most of them are desperate for an explanation, any explanation for their hair loss. My heart goes out to each and every one of you as my memories of watching my own hair fall out without any explanation are still raw.
It is true that before learning I had Alopecia Universalis, I could have held out hope that my condition was short-term, that it would self-resolve, that I would go on to once again have a full head of hair. Like most women experiencing hair loss, I was more interested in having an answer. Watching as a part of you gradually disappears and not knowing why is in fact harder than knowing why, even when that knowledge includes confirmation that your hair loss will be permanent. At least then we can get on with the business of readjusting to our new reality, that of life as a woman or girl with hair loss.
My advice to women and girls with unexplained hair loss, don’t give up. At minimum, you need to know why.
Have you ever experienced temporary or long-term hair loss? Did you seek out a diagnosed cause? If you were successful in finding the cause, do you have any advice for others who are losing their hair but have not found the cause?
Susan Beausang, President, 4Women.com
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