Engineer and mother reaches out to others suffering from this strange disorder
Layne Webber remains active with alopecia, sometimes wearing a hairpiece, other times opting for a hat.
Layne Webber, an electrical engineer and mother of two in Denver, Colo., wrote this touching note to a total stranger whom she learned also had alopecia, and with whom she wanted to share her experience of this bewildering and frustrating condition.
Alopecia universalis or alopecia areata universalis is a medical condition involving rapid loss of all hair, including eyebrows and eyelashes. It is the most severe form of alopecia areata, and there are no standard treatments, although many have been explored, as Layne shares with us.
Believe me, I was totally shocked when my hair started falling out. Since high school I’ve dealt with periodic bald spots but they were always small and easy to hide. And they always grew back. About two years ago, after my daughter was born, my hair really started falling out. At first I thought it was just the usual hair loss after having a baby, but it didn’t stop. About two months after my hair started falling out, I was diagnosed with Alopecia Universals. I immediately went on a high dose of Prednisone (I think I was up to 60mg at one point) and Rogaine. About 3 weeks after starting, this my hair started growing back. In the meantime I blew up like a balloon, gained 20+ pounds and had bad afternoon headaches. But my hair was growing and I was totally excited. My doctor started weaning me off—it took 6 months to finally be off the medicine. Then about a month after going completely off the meds my hair stared falling out again. I immediately went back to the doctor. I didn’t want to go back on the prednisone but I was pretty freaked out and probably would have done it if he recommend it. Instead he put me on Methotrexate (apparently a drug used during chemo to knock out your immune system). It didn’t work, and finally last spring I lost all of my hair. I then tried Clobetasol. This was a cream I put on my scalp every night and then wrapped my head in saran wrap—it wasn’t as bad as it sounds. My hair grew back a little but not enough to make a difference. At that point he told me my only other option was to induce a poison ivy-like reaction on my scalp and then use medicine to knock it out. He said it works in a very low number of patients. At that point I just wanted to stop all medicine.
I’ve been pretty lucky—my first dermatologist was VERY caring and easy to work with when my hair stared falling out. One of the doctors in his office even started looking into alternate treatments and at one point put me on Sulfazine—it was part of one of the studies she had read and had helped one of her Alopecia Areata patients. I, unfortunately, was allergic to sulfur medicine and had to stop after my first dose. I then found a dermatologist at the University of Colorado Hospital campus that specializes in Alopecia. He is an expert—if you can call yourself that for a condition that they really don’t know much about. He was the doctor that put me on the high dose of Prednisone, the Methotrexate and the Clobetasol. You might want to look into the alopecia registry. I believe it is out of MD Anderson in Houston.
I’ve also been lucky because I found an awesome wig stylist. She is a cancer survivor and started a shop to provide hair pieces to cancer patients and now alopecia patients. She is awesome. If you are looking for a wig I would recommend trying to find someone that works with cancer/alopecia patients. I’ve also bought a wig online but I had to take it to her to style. It was just too fake-looking out of the box. I actually get more compliments on my hair now (from complete strangers) than I ever did with my real hair. I’ve even had friends ask if my hair grew back because it looks so real. And it is very easy—I just shower and throw it on—no styling. I use two-sided tape on days I know I’ll be busy with the kids otherwise It just seems to stay in place with no tape. I only wash it about once a month. I bought a few swim caps for days at the pool. It is a little embarrassing because I feel like all eyes are on me but I’m starting to get over it. I also got my eyebrows tattooed on (by a medical permanent makeup artist). I never used to have very dark eyebrows but I love the tattoos. They stay on all day—even when I swim.
I do have to admit I cried every day for almost a year when my hair first fell out (and even now as I write this). I wasn’t really afraid of what people would think—I’ve actually been very open about it. I don’t go out without a wig or hat but I’ll tell anyone. I’ve found that people aren’t really freaked out by it like I thought they would be. They might be shocked if I showed up bald. Hopefully someday I’ll have the guts to actually go out without my hair. I’ve been most sad about my kids having to deal with it. My daughter may never know me with hair. And my son is young enough to not remember when I had it. But then I think about how they are going to grow up accepting the differences in people and actually feel like it is a good thing in a small way. I’m fine on just typical days, but freak out a little when something unusual happens—swimming with the kids, skiing, biking, etc. So far I haven’t changed my lifestyle too much—I just figure out a way to do what I want to do.
I hope this helps a little. You’ll be surprised by how many people know someone with this same condition. I feel like whenever I tell someone they know someone who has it. Here are some websites I’ve found helpful. I spent the first month pouring over the internet trying to find out whatever I can. I ended up realizing that they don’t know much about it and that every site says basically the same thing.