View Full Version : Hello Everyone

10-30-2008, 07:31 AM
I won't go into a super long story of my hairloss journey because quite frankly, these last five years suffering from hair loss has seemed like an eternity and I fear that if I get started talking about my follicle follies, I won't be able to stop.

I am 39 years old and I am an Alopecian. My hair started falling out five years ago. I have Lupus and in some people with Lupus, hair loss comes with the territory. Having SLE and not Discoid Lupus, I was surprised to find out that I have scarring alopecia. Usually it is Discoid Lupus or some form of cutaneous Lupus that can cause scarring alopecia (well that is what I was told anyway), so I was quite surpised when I recieved a "follicle death sentence" that stated that I had something called Classic Pseudopalepede of Broq (I'm sure I probably spelled it wrong...hell, I have a hard time even pronouncing it! LOL):cool:. I was never given a biopsy because of the classic "plaques" of lighter colored skin color and the "confetti" pattern all over my head.
I had a very hard time dealing with the fact that my hair was falling out and getting thinner all over, and so I decided to shave it all off. My family was very supportive and my husband was the first to suggest it, and so I let my daughter and my husband shave my head at that time. If it wasn't for shaving all of it off, the pattern of loss would not have been so blazingly apparent. I probably would have been told it was stress (which I believe is a big bunch of bull-donkey!) or some other thing. I wasn't given many choices because unfortunately what I have is like some sort of "end." I don't know how else to describe it...I guess kind of like a "burn out" and nothing can be done at that point.
Back then, I assessed the situation and since my plaques were just like little eraser marks I thought I could let the healthy hair that was left grow back in. But I was thrown for a strange loop when I started to lose other hair too. My eyelashes, eyebrows, nose hair and body hair started to disappear! I was scared that maybe I was going to have permanent hairloss everywhere! I was mortified.
Losing my body hair was not permanent and most of it grew back in. I do have patchy loss of hair everywhere, and in many places on my body, the hair grew back as this soft downy white growth...in other places, it never grew back in on my body. The only problem that I have found with this type of white hair is that in some areas, it doesn't seem to stop growing. And I can end up with a five inch white thin hair just sticking out of the side of my face or on my arms. They are rogue hairs! Then there are other white hairs that have come in that feel like plastic doll hair. This hair is actually very stubborn. I had that hair grow in at my temple hair line white as well as in my eyebrows! :eek:

After that first shave I bought a wig, and when my scalp calmed down and the hair loss slowed, I would attempt to grow my hair back. Just as it was starting to look good again I would get another flare...so I would shave it again to see what the damage was. My husband kept track of all the spots, (I swear he knows my scalp intimately!) and would tell me where the new spots where starting to converge with old areas. At that point we would have to make an assessment as to whether I would try and grow it again. Well, like any other woman devistated by losing her hair, I would try to grow it again! It was emotionally draining everyday and I felt like there was no hope.
After three years of flares and hair loss, I noticed the four year I didn't have a noticable flare...I did lose some hair, but it wasn't that bad so I continued to let it grow. For two years I had very little loss and I was able to grow my hair quite long, while learning all the tricks to try and make it look more full. I was careful not to process it or dye it also. I didn't want to take a chance and trigger a flare of any kind. But as fate would have it, I do have a trigger to my hair loss...I am very allergic to mold. If I am exposed to it for any length of time, it triggers an auto-immune response and poof! there goes my hair.
I started to lose my hair again this past spring and as it was coming out faster and faster, my husband started to investigate our home to see if there was mold growing anywhere. Sure enough, there was! Once again, we decided to shave my head, and that is when we saw more plaques than ever before. Only now, my white spots and light colored spots from when i first started losing my hair where starting to turn a darker color. The skin on my head was always a little leathery, but now it felt so tight, almost like it wasn't even my scalp that I was touching. It is dimply, spotty and just overall surreal to me.

I had my husband shave my head this past July and I finally made a decision not to hide anymore. You see, I hid my alopecia and did not tell anyone outside my immediate family. I wore a wig, or would allow my hair to grow and nobody knew I was afflicted with this horrid disorder.
But something clicked in me and I no longer wanted to hide. I decided to embrace my life as an Alopecian and to proclaim it proudly. By doing so I was allowing those in my community to know that I may be bald and beautiful, or come into a shop with a wig or wear a headwrap! I am a chameleon that can blend or stand out if I choose.

It has not been easy getting to where I am right now in my life. I hid for so long, embarrassed, ashamed and thinking that I equalled the amount of hair that I had. My hair was everything to me and now it was gone, but as I enter my 40th year of life, I realized I get to walk this next milestone as an Alopecian. The temptation for me would be to allow my lack of hair and being identified as a "bald woman" to now define me, much the same as having hair defined me in the past. Finding balance and understanding that our physical appearance does not define who we are, is a very important thing for me to hold tight to.
I am an Alopecian woman, defined by the amount of love I give and by the radiant beauty of my soul...I am reaching out and reaching in to share my heart and soul with others.

Thanks for listening.

10-30-2008, 10:35 AM
Hey AlopecianMuse!

You look beautiful bald, I'm sure you've been told that a LOT. :DThank you for being here and sharing your story. You are a strong voice for women with hair loss and an inspiration.



10-31-2008, 11:34 AM
Thank you for your compliment...I think all women look beautiful bald. But then again, maybe I'm just biased! :D