Hair loss impacts our lives in more ways than most people could possibly imagine. It is part of the equation for many things, including choice of outfit (if you are fair haired like myself, black shows the fallen hair the most) time allotted for getting ready, deciding to even go out in the first place, and enduring the torture of hair prep and frustration. Frequency of showers, frequency of combing, hair up, hair down etc. But even worse than that, I have found it has crept into matters of treating my health conditions. I have fairly not-so-great asthma and I have avoided using the suggested and prescribed preventative treatments because I feared it could *possibly* worsen my hair loss condition. So, I always went without and lived with my asthma not really being fully controlled. Back in 2004 I was prescribed Advair by my allergist and I took the plunge and began treatment. That stuff is awesome. I mean seriously, for the first time ever I knew what it was like to not have asthma. I could do all the things that normally causes flair ups, like run, laugh like crazy or even cry, all without having to reach for my trusty inhaler.
Well as the months past my voice began to deepen. First it was raspy, then sultry like Demi Moore, then it turned Kermit The Frog. I mean seriously imagine trying to interact in society with hair loss and a voice that sounded like you came straight from the Muppets. Well shortly after the Kermit stage, I lost my voice completely and it got to the point where I didn’t even know if words could come out of my mouth when I spoke. So I stopped taking it. I do want to point out that all while I was taking the Advair I did not notice any worsening of my hair loss, nor when I stopped it. But bye bye Advair and months later, hello voice.
So fast forward to today. It seems that over the last couple years my asthma has taken a turn for the worst and I find myself using my inhaler more and more. I also find myself at the local urgent care, more and more. And even though I am frequently told to get on a preventative treatment such as Advair, I refuse. Why? Well now I have it in my head that *maybe* just *maybe* it could make my hair loss worse. I can’t believe how stupid that is. I opted to not properly treat my asthma because I was afraid any medication I took would worsen my hair loss. I am seriously embarrassed admitting that. Well last night was the last straw. My asthma was so bad I nearly landed myself in the emergency room, I made it through the night and went straight to the doctor at 8:00am. [click to continue…]
I recently came across an article in the popular online UK news website, Mail Online, titled “Newly brunette Fergie’s centre-parting is one great divide.” Catchy for a news title, and in my opinion, cruel for the 33 year old Black Eyed Peas singer. Women’s hair loss is such a personal and emotional struggle, I can only imagine how much this article may have potentially hurt Fergie. I think the general consensus is that celebrities are fair game to scrutinize, and point out every ounce of weight gain, facial blemish and anything just a little “off.” But I disagree, I really feel that certain things should be off limits, and probably because I am bias, I definitely think hair loss is on that list of things to not exploit for editorial entertainment.
The article speculates that Fergie’s hair loss could be from the usage of extensions that may have resulted in traction alopecia (a form of alopecia characterized by gradual hair loss caused primarily by a pulling force being applied to the hair). It’s hard to say from a photo what the cause of her hair loss actually is. As many of us female hair loss gals know, often times we don’t even know the cause. One thing is certain, Fergie’s beauty is unaffected, she is gorgeous and would still looking stunning without any hair at all.
If anything good can come from this article, it would be that perhaps women suffering with any type of hair loss can know they are not alone in their struggle. My heart goes out to every woman who has to suffer with this.
In September of 2007 Taylor shared her story with the Women’s Hair Loss Project. She has now written to share her update with us.
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As of June 08 I began to be able to stand and walk, after beginning a new treatment that was made available to treat the nerve damage I had in my legs and back from my accident. Now, almost a year later I’m up as if nothing ever had gone wrong. I’m still getting a hang of the whole running thing though, it’s quite the sight. All my health issues completely disappeared, but alopecia decided to come back and pay me a visit.
My hair began to fall out in late November, just before I graduated from college. At first it was just a little more then usual when I was washing my hair. I reasoned that it was because I hadn’t brushed it for a few days so all the hair that fell out naturally had not yet been removed. It became more and more noticeable until there was just no convincing myself that I wasn’t relapsing. I was devastated because I felt that for once my life had been going right, and for the first time in so long I had the opportunity to just be a normal girl and fit in with everyone else. I felt like I was being punished, as ridiculous as it may sound.
One night in the early hours of the morning I came back to the Women’s Hair Loss Project to read what I wrote about my first experience with Alopecia. I felt like a hypocrite, talking about how inner beauty matters the most and there I was falling to pieces because I was losing my hair again. But I had to laugh at how much times had changed since re-reading what I wrote (especially about my ex!). This time around I was very lucky to have such a good support system; my amazing friends Jess and Matt who were there to pick me up off the floor and knock some sense into me. I really don’t know what I would’ve done without them. The biggest lesson I’ve learnt since Alopecia’s… graceful return is that what makes us different, makes us beautiful. Our hardships in life really define who we are as a person, and without them we wouldn’t learn and we wouldn’t grow. Alopecia makes me look unique, which is something I’ve come to embrace. I know so many people who look and act like clones, being a carbon copy of someone else would be a nightmare to me. [click to continue…]
The other day I was surfing the internet and stumbled across an advertisement for the OOKISA hair products. The advertisement stated it regrows hair, so of course I had to immediately inspect it. I quickly clicked on to the link and was taken to the OOKISA website. I was greeted by the little cartoon above, which I have to admit, is super cute. In fact it actually is a little animation, and her hair goes from short to long on a loop. I want to preface this post by saying I am not trying to attack the product, but I have some serious issues with the claims they are making on their website. I have no issue with the hair volumizing, extra shine claims, I definitely think that is possible with a really nice shampoo, but hair growth?
Their website states the following, “In addition, these ingredients improved hair flexibility, enhanced moisture retention and stimulated key factors involved with the growth of new hair. This resulted in an overall youthful appearance to hair.”
What are the key factors? I searched the product list and found a:
“Fortifying Shampoo” which the company states “powerfully cleanses and removes polluting and clogging substances that damage hair and keep you from achieving optimum hair thickness.” Contrary to what some may believe, clogged pores do not cause hair loss. Having said, that it is nice to be squeaky clean, so okay I’ll bite, and say this may be a nice quality shampoo for having clean hair.
They also offer a “Replenishing Conditioner” which states “moisturizes hair and is lightweight,” big plus for thin hair gals, but still haven’t seem the active growing agent.
I spot a “Instant Volumizing Souffle” which I admit sounds quite tantalizing to my follicles. Do I put it on my head or eat it? I love soufflé! [click to continue…]
I never really stop to think how much effort I put into trying NOT to think about my hair loss and how exhausting not thinking about my hair loss actually is.
I avoid mirrors, strong overhead restaurant lighting, I turn the bathroom lights off before going in (in my house). I’d do it in public to if I didn’t think I’d get tons of grumbles and nasty comments from the women already in there. Ha! Unless they had hair loss, then they’d give me a high five. Typically when I need light I use softer lights that are sort of dimmed.
Up in the morning, early 5:00am start to the day. I shower and I comb my hair quickly trying to get past the torture. Shower is always fun pulling the hair out of all sorts of odd places including my deriere. Oops stuck between my fingers, rinse it off, rinse it off or paste it on the bathroom wall. Always fun to look at after. Comb, scoop, comb, scoop, hair into the toilet. I pull my hair back in a ponytail or up in a clip to avoid feeling the hair fall all day. However, (as thin hair ladies know) the clip can hurt since it sits so close to the scalp with none of that pesky “hair padding,” it can become quite itchy and bothersome, so I loosen it up to make sure it’s perfect and set for the day. Oops now my hair looks flat on the left side. Do it again…oops now it’s flat on the right. Oh my gosh I look like a 
human ice cream cone, with no hair on the sides and a little on the top, the shape of my head has me looking like a Mister Softee. Do it again, darn it now my gaping center part is shining for all the world to see. Hummm I don’t remember it being that thin before. Maybe I should use the blow dryer some more. Blow to the left, blow it to the right. Apply clip strategy again, ah this “style” is okay. My simple clip style takes longer than it looks, same for the ponytail. This hair over that hair, brush here, brush there, trying to maximize every strand. Volumizing shampoo, volumizing conditioner, volumizing spray, volumizing mousse, plump this plump that. Poof it’s still flat. Part my hair one millimeter to the left of its normal part, nope, one millimeter to the right, yes that’s just perfect. Now I can begin my day. I glance at my watch, I wonder what activities are left to do on this Saturday at 10pm.
Happy Sunday Ladies! [click to continue…]
I got up this morning, walked the dog, came home, fed the dog. Threw on some workout clothes and hopped down to the gym (garage). I put my earphones on, I turn the ipod on, and I started the treadmill. The first song queued up is one of my favorites, and it just puts my mind at such ease and makes me smile. The song only lasts three minutes and thirty five seconds, but that’s enough. Enough to put my mind in the right mood and enough to set my day up with possibility. I of course played the song over and over since I wanted to draw out as much serenity as possible 🙂 I jogged along and felt content and… dare I say… happy. Sure my hair is falling out, it fell in the sink, it fell in my coffee, stuck to my sweatshirt, but I was happy. In that moment I felt right.
I think we need to take more time for ourselves, to do the things we enjoy and remind ourselves of living. It’s way to easy to obsess about our hair loss and worry about the future, but in doing so, we so frequently miss out on today, the beauty around us, the beauty within.
So now I know you are dying to know what song I was listening to. Well here it is for your listening pleasure (just click on the play button below) and your three minutes of freedom:
“Put Your Records On” By Corinne Bailey Rae – Best 0.99 cents I ever spent on iTunes!
[audio:https://www.womenshairlossproject.com/wp-content/uploads/2009/03/happysong.mp3]
Wishing you all a beautiful and HAPPY Friday!
Enjoy life, enjoy freedom, enjoy being you.
A blog from the network, written by Bonnie.
Well, this was intended be a simple little blog about asking you all to sign a petition asking Bayer, the manufacturer of Mirena, to fully disclose the side effects of Mirena to potential patients. But in checking back to the Mirena website to make sure I accurately used their wording concerning hair loss, I have now found that instead of just burying it as an “uncommon side effect, affecting less than 5% of users,” they have now removed it all together. I am so outraged that I am literally shaking! I am almost in tears. When I initially figured out that the Mirena was what was causing my hair loss, I found on their website that it listed “hair loss” as an uncommon side effect (though I do not feel that something affecting up to 1 in 20 users should be considered “uncommon”). In January, they updated their site to read “changes in normal hair growth cycles.” And now, the only place that you can find anything listed on their site about hair loss is under the Physician Information tab. It lists Alopecia as an uncommon side effect. “Alopecia is NOT listed in the Patient Information or Safety Information section at all. It simply says, “for a complete list of side effects, please contact your health care provider.” The pamphlet I was given did not list hair loss, alopecia or changes in normal hair growth cycles. How in the world are women supposed to get accurate information?
I had a Mirena for 11 months beginning in 11/07. Without even going into the horror story of how it was inserted, I basically bled for almost 11 months straight, and was told this was “normal” and that it would eventually stop. I noticed significant hair loss in August 2008 and was diagnosed with a very low ferritin level (I guess that’s what happens when you bleed literally all of the time!). I did mention the Mirena to my GP but she did not think it was a factor. I started taking iron supplements, as well as many other vitamins, but my hair loss just continued and I became very depressed. My hair loss got worse and worse and I just could not figure out what was causing it. I was literally always the healthiest person I knew. [click to continue…]
by Rebecca on March 1, 2009
This beautiful story of inspiration, strength and understanding was written by Becca, a member of The Women’s Hair Loss Project Network.
Yesterday started like one of those days that you don’t even want to get out of bed for me. Tuesday, my 2 year old and I both had the stomach flu, so between her vomiting anything that went in and me having a mind numbing headache, we survived. My husband decided that he would take the day off yesterday to help us recooperate and maybe do the five loads of vomit laundry that we accumulated. I had to get my normal bloodwork done, I have it done every two weeks because of my hypothyroidism, so we had to find a lab that would accept my new insurance. I had some bad experiences in the past with waiting in the lobby of these places, till they actually forgot I was there and turned out all the lights. I didn’t want another experience like that, especially being sicker than I normally am.
I reluctantly put on a wig, it was colder here so no bald head outside, and we left the house. Once we got to the labcorp building I just wanted to go home and lay in bed with a bucket. After registering with what I thought was just a receptionist, she informed me she does the whole shebang, registery, bloodwork, and follow-up. While she was entering all my new information, she turned around and said, “Ya know, I was just diagnosed with what you are getting bloodwork for.” I laughed a little and said good luck! Here is a woman in her early 50’s, very put together, almost looking defeated when I said that. I realized how it came across and I explained to her that what I have is a very rare form of the disease and all my symptoms are extremely heightened. She asked me about some of the symptoms, like my hands and feet fall asleep, my joints ache, exhaustion constantly, etc. And then she mentioned hair loss. I’m not one to get embarrassed, so I just told her, “Yeah, mine is so bad, I shaved my head a few weeks ago.” She just looked at me and then told me that she too, is having hair loss in quarter sized patches and it scares her. I thought of all you ladies immediately!! I could see in her face this look of upsetedness and sympathy. I knew what I had to do for her and the hairlossproject. I told her how devastating it was for me at first and how I found support with you ladies. I told her how I cried all the time at first and really felt alone. I told her that acceptance will come, no matter what happens with her hair. [click to continue…]
Mary discusses living with alopecia, and how attending a Bald Girls Do Lunch event dramatically changed her life. Read Mary’s full story here.
by Y on November 21, 2008
Hi everyone –
As I am sure everyone is already aware, the Internet can be such a wretched place for men and women who are searching for answers for their hair loss. When I started losing my hair 9 years ago, the online resource options were pretty slim, but what made it worse to me was that the available online forums seemed so depressing, confusing and darn right ugly at times. People fighting and no direction really sent me more into a downward spiral, of course so did everything else. 🙂 This is why I wrote a post last September 10th explaining my thoughts and opinions on online forums in general, and why I had chosen not to include one on this site. I have sort of softened up my opinions on online message boards since that time and understand now the value it can have for some individuals. I realize that if forums are cultivated in a respectful, professional and loving manner that they can be a huge value to people.
A new forum has recently been launched by the founder of The American Hair Loss Association. The forum titled Bald Truth Talk http://www.baldtruthtalk.com is aimed to create a safe platform for men and women to get real information and support without the confusing junk that often times infiltrates online message boards. To read an article about this new resource visit: http://www.thebaldtruth.com/news/baldtruthtalk-new-hair-loss-forum/
I am proud to be a part of this new online support message forum. I am already a member over there and will being doing my best to represent women with hair loss, and to share information and guidance the best I can. I want to make sure that women everywhere suffering with hair loss knows they are not alone. The only thing worse than losing your hair at 21 years old, is to be losing your hair AND thinking you are the only one. [click to continue…]
