Women’s Hair Loss Project

I went to an allergist today because I have really been having a lot of skin issues, itchiness, eczema,  a lot of contact dermatitis around my mouth, itchy eyelids, itchy eyes and of course my usual asthma. I am always apprehensive about going to a new doctor because the patient form you have to fill out always has that place that asks you to list the “current medications” you take, and putting “Aldactone” on there always triggers the question, “You take Aldactone? What for?” So I get nervous going to new doctors.

Off I go to the consultation, the doc doesn’t even ask anything about the Aldactone, moving full speed ahead, talking about my allergies.. blah blah blah. Then he gets to the part where he wants to suggest the asthma/allergy medication, SINGULAR. Well I already know from previous searches on that medication, from previous docs trying to get me to take it, that some women complain that it causes hair loss! I had resolved myself into taking Advair ( http://www.womenshairlossproject.com/hair-loss/advair-muppets-poor-health-decisions/ ) because I had previously taken that without any issue to my hair, but this? The unknown?

I had to bring up my concern with the doctor. I HAD to let him KNOW, what was going through my head. So out with it, I told him that I suffer with hair loss, hence the reason I taken the Aldactone, and that I had read on the Internet that it can cause hair loss. He seemed to not focus too much on my personal hair loss situation, which, was good, but then he sort of made light of it, in a quasi mocking way “Well if it’s on the Internet, then it has to be true.” He said he never heard of an instance of singular and hair loss. Well neither did my gynecologist that gave me one of the highest androgen pills on the market, that started this whole mess. He proceeded to pull out the insert of the singular medication and looked in the side effect area, and pointed out that “hair loss” isn’t listed there. Hummm, that doesn’t mean it can’t happen or hasn’t happened to people. I don’t think most doctors know how to react to a woman with hair loss, in all fairness he was a decent doctor, he spent a lot of time with me and genuinely seemed interested in helping me treat my allergies/asthma. This is just a separate and unfortunate issue.

But, back to the point, the title of this post. When I had to bring up that “I HAVE HAIR LOSS,” I felt so small, so humiliated, like I was running around the office with my shirt off or something, actually I probably would have preferred that over telling him I had hair loss. I was so down when I left the office, so defeated. I didn’t feel liberated or empowered for sharing that tid bit of information, I felt ashamed. It saddens me to think that no matter how far I feel I’ve traveled, I am reminded that it isn’t quite far enough. I know I should not be ashamed of my hair loss, yet I had those feelings anyways. I guess it’s time for a little self-reflection.

I don’t even know where to begin. I am speechless and have not yet managed to pick my jaw up off of the floor. I sit her blankly staring at the computer screen, thinking that world has gone to hell in a handbasket.  I  was sent a link to a page that contained an iPhone application called “Hair Clinic.” The site claims it to be “The World First Mobile Hair Clinic System” Is it just me, or should there be an apostrophe “s” after the “d” in “world?” I’m no grammar diva, but that looked a little off.

But I digress.

Word for word, their website states:

“HAIR CLINIC, the iphone application helps you to protect it easily Various types of Inaudible wave frequencies from iPhone speaker protect your hair and hair roots with following 3 steps.”

By the way, that is exactly how it is actually written on the website. Was that English?

You simply must be busting at the seams to find out how this innovative product works. Well slide to the edge of your seat ladies, sit up straight and listen:

10 minutes a day - 3 protecting hair solutions

1. Cleaning - Keeping pores clean for 3 min.
2. Massaging - Promoting blood circulation for 4 min.
3  Improving - Improving function of hair roots for 3 min.

How does an iPhone application do that? I’m particularly interested in # 3. (??)  Just picture it now, you could be at lunch with the girls, whip out your iPhone and start “improving” your hair loss. Do you rub the phone on your head for the massage? Do you need to turn your phone on vibrate first? The whole thing in incredibly funny, from the words and sentence structure on their website, to the whole concept of an iPhone application for hair loss.

The application was just released on April 20, 2009 - I guess they missed the date they should have released the product, April 1st!  So for only $3.99 you can be the envy of all your friends.

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 Elle York 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 clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

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...]