hair loss story

In this video, WHLP member, Hellcat, vlogs about her hair loss story. I loveeeee this video, I love the openness and honesty and it’s so amazing to actually be able to hear and see another woman discuss her dealings with hair loss. Beautiful. xoxo

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I received this email, and requested permission to share it here, with all of you. Much thanks to “A” for writing me this incredibly amazing email and allowing me to share her story. I had gotten home one night and made a quick check of my email and saw this in my box, I felt moved, excited, touched and inspired all over again. Thank you! 

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I want to thank you for your wonderfully honest, heartfelt, and supportive web site. I found the womenshairlossproject site one day on the internet and my life hasn’t been the same since. I have been struggling since my late 20s with thinning hair due to androgenic alopecia and I am 49 now. I so wanted it to be a medical issue that I could then take a pill and be cured but that was not to be. I took aldactone for a while and it stopped the shedding but I hated taking pills so I went off those after a year. I found a shampoo for thinning hair that controls the shedding for me and I have used it for several years (Nisim is the brand). However, the diffuse thinning continues and it’s worse on the top of my head. I have been wearing baseball caps everywhere for over 15 years now, even at work, it’s my signature look.

I have been living (and I use the term living loosely) a subdued life, shunning social activities and just not being able to enjoy the outdoors. Being naturally shy anyway, my hair condition has made me hyper sensitive and even more uncomfortable being with other people for fear of being found out, stared at, or laughed at. You don’t realize how insidious the negative inner dialog becomes until you see yourself 20 years along in your hair loss and how much you’ve retreated from life. You also can’t help becoming more cynical of people thinking they have nothing better to do than find weaknesses in you to possibly exploit.

I have grown especially weary over the last year of wearing hats, of spending an hour fixing my hair moving one hair this way and another that way hoping for a better outcome, of feeling less worthy and less than in everything. I traversed the web to find solutions and support and I found it with you and your web site. I found hope and realized I wasn’t as alone as I felt. I began to believe that my life could be different. I began to believe that I didn’t have to hide anymore and that there are solutions. It took many months for me to finally decide to DO something. I originally shied away from wigs because I believed it’s harder to hide wearing a blonde wig and I didn’t want anyone to know I was wearing a wig. [click to continue…]

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I received this email from an amazing gal named Joanne, and I asked her if I could post it for all of you. I have always felt that it is so healing and helpful to hear the words of another going through the same thing we all have been going through. To relate, to understand, to learn… anyway you slice it or dice, sharing is healing. 

Here is Joanne’s Email 

I’ve stepped into a little bit of heaven finding you and this website. I commented to you on Facebook, that you are an amazing and beautiful woman and I wished you lived next door to me! Ha, ha. Yeah, how nice it would be to commiserate and get a Starbucks with someone who understands. It’s so easy to feel isolated with this hair loss crappy lot in life, but your website has opened a door for all of us closet sufferers. I thank you for that, from my heart, along with all the rest of the women on your blog.

Ok, here’s my story: I once had pretty, silky, blonde hilited hair. I once felt pretty. I once liked being in pictures with my two blonde sisters. Then, After being diagnosed with autoimmune disease – I noticed my hair shedding beginning. The drain in the shower, the drain in the sink while blow-drying, my hairbrush… What the heck was happening? I talked to every medical person I could find, a Rheumatologist, a Naturopath, my regular MD, a Dermatologist, my Hairdresser, anyone who might know the answer. I wanted someone to save my hair for me. PLEASE! I so desperately wanted a “diagnosis” that could be corrected by just taking something or doing something. My thyroid levels were normal, my blood work, normal, except for my abnormal ANA, but I was told that alone, shouldn’t be the cause. Biopsy of my scalp, normal. Everyone had an idea, of what to try, but none of them worked.

No matter, my hair kept shedding. I tried every holistic and dietary thing I could that held out even a vague promise. Some periods of shedding seemed to slow but then others were worse. It seemed there was no going back.. my hair would never rebound.
It was excruciating to see myself in the mirror and even more so to see myself next to my two sisters with their beautiful thick blonde hair. I felt like the ugly duckling sister and never wanted to take family pictures after that. Sometimes, my family would tell me I was being “silly”, oh really? Let’s switch heads for the picture then. I was told I was “still” pretty, get in the picture. I often thought, if they were me, they would NOT want to have their picture taken next to two thick blonde heads! Easy for them to say! My husband would tell me I was “pretty” too. My hair was “pretty”, I shouldn’t worry so much. They were all trying to be nice, trying to make me feel better, but they didn’t know how this was consuming me, ruining my life, making me refuse parties, events, anything where I couldn’t somehow hide my hair. [click to continue…]

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I received this wonderful post from Lina a couple days ago and she has given me permission to share it with all of you!

Here is Lina’s Story:

This is new to me but I have been inspired lately by our group of wonderful women to share.

I am 43 years old and have been dealing with hair loss since I was 18 – yep – 25 long years! I have been through the gammut of emotions that I read from others: sobbing, depression, begging, praying, anxiety. I have gone through the habits: showering and brushing my hair in the dark, wiping hair out of places that I won’t mention, counting all the hairs I’ve lost, sitting on the vanity and inspecting my scalp for hair growth, I don’t notice people – I just stare at their heads!

What has all of this gotten me? I watched my 20’s and 30’s go down the drain with my hair. I’ve loathed myself for what seems like forever. I’ve spent thousands of dollars on products that, big surprise, didn’t do a thing but make me poorer. I bought a topper two years ago and wore it twice – I hated it and it was cut wrong, so, I bought another and I have had it since Christmas. I also have a wig in my closet, just “in case”.  So after needing to be in a place where people understand – I’ve been back on this site for a few weeks now and have become so inspired by our “Rock Star Leader” that guess what? I pulled out that second topper and have been wearing it now for 3 days in a row! I’m not going to lie, it’s different. Can you explain to me how all I wanted for 25 years is more hair and now when I look in the mirror and see myself with more hair – it’s “weird”. I know! [click to continue…]

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As women dealing with hair loss we often want to conceal the fact that we are enduring a struggle that we feel no woman should have to be faced with. It’s a secret, and for many of us, it’s a very dark one. It’s not easy to come out to friends or family, for fear of not being understood or sheer embarrassment. Which is why I was so proud to hear that Lisa, a longtime member of the Women’s Hair Loss Project, was coming out of the shadows and sharing her story in a big way – front page of the CNN Health section. How’s that for an audience?

The story is titled, “An agonizing secret: One woman’s story of loss.” It is an honest, and heartfelt inside look into the struggles of being a woman with this condition. Knowing Lisa, makes this story and reveal all the more emotional and amazing. Despite having understandable hesitation and reservations about “coming out,” she persevered. Being a woman who has essentially lived in hiding with this condition, only using an initial as my identity on this site , I’m in awe of what Lisa has done. Sharing her story brings awareness to women’s hair loss, and it lets other women know that they aren’t alone in this. We don’t have to be silent, we don’t have to keep it to ourselves. Sharing is healing – I believe that.

Lisa joined the WHLP in June 2008, and quickly became a beloved member of the community and a close confidant of mine. While struggling through the sadness, we often found laughter in making light of some of the idiosyncrasies of dealing hair loss, we shared more than our hair loss, we shared our lives – as many women do in the network.

I encourage everyone to visit CNN Health and read Lisa’s story. We often live in the shadows with hair loss, and it is a proud moment for us all when a woman steps forward and represents us all – our feelings and our struggles.

To Lisa: Celebrate today, and never second guess the amazing thing you have done. Be proud and feel strong. If you cry, make them happy tears! I’m crying happy tears for you. Your path is one I hope to take one day – accepting myself entirely as being a woman with hair loss and willing to stand tall and share that with the world. For now, I’m still that lonely initial, “Y.”  :) Much love to you girl!

I’ll be interviewing Lisa later this week about her decision to come forward with her hair loss story.

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Bonnie has been a member of The Women’s Hair Loss Project since Nov. 2008. Yesterday she wrote the most incredible blog in the network, declaring victory in her war with hair loss. Myself and so many others are beyond thrilled over her recent news. So with her permission, I am posting it here for everyone to read.

Here is the post:

I’ve been thinking about writing this blog for a long time, hoping that my success with regrowth would continue and that I would have great news to share. It’s weird but I guess I was sort of waiting it out to make sure I wasn’t hallucinating or waiting for the other shoe to drop… the universe saying HAHA! and my hair to start falling out again, but I think I can now say that I feel like I’m in the clear. I think I have finally won this war. Wow.

It’s been such a challenging year and half with all of this and I still cant imagine how uncluttered my brain must have been before all of this happened. It has been such a life-changing thing that it’s VERY hard to get past it. I know all of you understand this.

Slowly, slowly, since I shaved my head on 6/1, things have been improving. My shedding stopped a couple of weeks after the buzz (I stopped Spiro the same day) and it began filling in little by little. I really had some particularly thin spots and used A LOT of Toppik for a while, but I slowly stopped using that, quit the Xanax (I do not know how I would have gotten through 2009 without Xanax!), kept going with my supplements (fish oil, flax oil, vitamins and iron) and tried to exercise real patience and it has actually worked. My thin spots have slowly filled in and they KEEP filling in and I dare say that I think my hair is back to normal. Sigh and a big deep breath! For the first time in a very long time, I can now actually say that my hair looks good. it has taken me a LONG time to be able to say that and mean it.

I am still a product junkie (maybe now more than ever) and I still take detours by every mirror to check my hair out a zillion times a day. I think I will probably always.

I’m ready for a cleansing ritual for getting past this. Today I am going to go back to the wig salon and ask them about donating the beautiful wig that I bought there (and never actually wore) and maybe even the Gremlin wig too if they’ll take it. Yeah, the pictures of that are scary but KatKat did a perfectly AMAZING job of taming that beast. I’m going to see if I can donate the wig(s) to another woman that is suffering with hair loss and can’t afford to get something that will make her feel more comfortable.

I just wanted to update all of you. I have found such amazing support here and I truly cannot imagine how I would have gotten through this battle without WHLP. it has literally been a lifesaver for me.

I wish all of us more hair than we know what to do with (only on our heads). MUAH!

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I Will Beat This – Jessica’s Hair Loss Story

by admin on September 11, 2009

I had written awhile back but wanted to send you my story again, and this time post some positive updates.

One thing that I noticed way back when my hairloss journey started, was that the negative posts and testimonials by far outweighed the positive ones. My fear was that most women were losing this hairloss battle. My hope was that once they solved their hairloss nightmare, they were too busy not worrying about their hair to post their updates. I want to submit my story because I am having positive results as I attempt to figure out what has happened to my hair and how to stop the cycle of loss.

It was 2004 when my life changed. It was 3 months after I had stopped taking birth control (alesse) and my hair was coming out in ropes. I’ll never forget taking a shower before going out one Friday evening, and my hands were covered with hair. At the time, I had no clue that it was related to the cessation of using birth control. I thought I was dying, from cancer, from something. I stayed home that night and didn’t go out, I’ll never forget sobbing the whole evening, scouring the internet trying to figure out what was going on. My vanity was bruised. I remember feeling too ugly and embarrassed to be social or even go to the gym. I took a 3 week leave of absence from my job to go be with my then-boyfriend (now wonderful husband!) in Europe where he was for work. I needed his support and he was truly there for me no matter how embarrassed I was. I had extensions put in after much research, just to make me feel like I had hair again. I did everything I could to mask what was going on with my hair, while I devoured information to figure out what happened to me. It was then that I realized it was the birth control pill.

I made the mistake of jumping back on birth control because doctors told me that I might be responsive to a hair-friendly pill like Yaz or Yasmin. I chose Yasmin and figured I would just stay on it the rest of my life if I had to. Back then, all I cared about was how I looked, not about my health. I kept the extensions in for about 2 years. One day I went into the salon to get them done and my stylist said – “You know you don’t need these anymore. They are just your security right now. Your hair is fine.” What?? My hair was fine?? I was so used to the weight of the extensions that I didn’t believe her. She washed my hair and cut it without the extensions, and we blowed it dry. She was right, I looked totally normal. I was ELATED. I don’t think I stopped touching my hair for days. It was all mine, and I looked absolutely normal. It had thin spots, sure, but I could wear it up or down and it had body and I looked like me again. It was not nearly as thick as it was before the loss, but it was enough. [click to continue…]

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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…]

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Having Hair Loss Is Exhausting

by admin on March 15, 2009

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…]

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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…]

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