hair loss support

They Say It Takes 30 Days To Break a Habit…

by Lina on September 14, 2012

Lina’s Update: 

Hello to my wonderful sisters. I thought I would update you on my hair wearing process. Today marks exactly 5 weeks since I first shaved my head and have worn my wig “full-time”. The few posts that I have made I noticed a lot of struggles out there and I wanted to let you know that I have not abandoned you, on the contrary, you are all on my mind.

So, quick recap: I shaved my head because after 25 years of battling hair loss, I had a “melt down” this summer (hair loss plus a lot of life stuff), I was 3 months after major surgery and boom – a bout of TE set in – well, no hair to lose any more and out came the clippers (I was drinking wine at the time, hmmm). Well didn’t cry when I did it and haven’t yet shed a “hair tear”. Well, that night I was brave, next morning I looked in the mirror and went, hmm – is that what I really look like :-)

Well, no going back right? I had to wear my “just in case” wig. Maybe God knew I would chicken out and get frustrated and not wear the wig after a day or two and that’s why he gave me the strength to shave my head – this way I had to commit to wearing hair. I will tell you the honest truth in my experience – I was frustrated with the wig, it takes getting used to: used to feeling like you have hair, seeing you with hair, accepting the fact you wear hair (that’s the toughest). So, first few days, wanted to rip it off, couldn’t look in the mirror because it didn’t look like me. How funny is that? I haven’t looked like me in a number of years – hair or expression. I avoided mirrors for the first few days. I finally washed the wig – much better, positioned her properly on my head (made a big difference), got the wigrip that Y suggested (life saver). [click to continue…]

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One Step Back, Two Steps Forward

by admin on October 7, 2011

In communicating with a fellow network member today I was reminded of some thoughts which I wanted to share with all of you.

Dealing with hair loss has been hard, very hard. I’ve felt it has robbed me of many years of my life because I spent so much of my 20’s hiding, making excuses, avoiding social situations and really feeling completely uncomfortable in my own skin. I placed walls around me and rarely would let anyone in. I was a stranger to myself.

With time… a lot of time, I became more accepting of my current hair loss situation. I no longer prayed for all my hair to come back, I really prayed for strength to deal with this hand I’ve been dealt and I prayed for the courage to take the next step towards moving on. With the passing days/months it did get easier to deal with my hair loss and as the years progressed, while I’d still slip back into my own self loathing and depression, my “down times” became shorter and my recovery times much faster. Most days I can stare at a pile of hair in the sink that used to render me a sobbing mess, and just say a few curse words and send the mess down the toilet. Au Revoir. Other days, it takes the wind out of my sail, but never to the extent that it used to.

Most of the time we speak of what “such and such as done to us,” but not nearly as often do we sit and ponder what “such and such” as given us. There is no question that hair loss took a lot from me (because I allowed it to), but it also gave me things… it gave me a deeper understanding of human emotion, it afforded me a whole new perspective on things and life, it handed me appreciation for many things I previously took for granted and it taught me to be more patient – albeit not nearly as patient has I’d like to be :) It also showed me that I was stronger than I had previously given myself credit for. [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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Helping Another

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…]

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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…]

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Written by Mary

Hi everyone,

I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.

I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.

Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.

I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.

Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5”.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show – way too heavy and thick, and I picked a color that wasn’t a good choice. [click to continue…]

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I wrote this in response to Lisa’s recent blog entry “Lost Cause,” and thought it was worth reposting here as well.

Dear Lisa,

I can so deeply internalize your struggles. Is this drug helping… Is it making it worse? There are so many unanswered questions about women’s hair loss. This may sound a bit odd, but I think the longer I’ve lived with hair loss the easier it has gotten for me. I have just a speckle of the hair I had 4 years and certainly 9 years ago, but somehow I just deal better. Those years I didn’t get out of bed half the time, sat in the shower crying and had my mind set that my life was over.

It wasn’t over.

I awoke this morning and fastened my hair tie (wearing my hair down and *feeling* feather hairs is more of reminder) grabbed my coffee and the day begins. I don’t dwell on the looking at myself anymore and I suppose that is the difference is in my hair loss life from not too long ago. I can easily get wrapped up in the balding spot and thinning areas I meticulously cover up with my little Houdini wand called the “comb.” But it serves no purpose. I am doing everything I possibly can and I rest easy knowing I tried EVERYTHING. They say “God helps those who helps themselves.” I’m certain I fall under that category, I’m still waiting to be freed from the shackles of hair loss. “God.. I’m ready now” :)

I’ve prayed at home, at the chruch, to St. Jude, to the high heavens, to anything holy and divine that could save me and save my life. Clearly it appears that being a woman with hair loss in this day and age requires an “Act of God” for recovery… “God. I’m ready now.”

The truth is, in some ways my prayers have been answered. No I didn’t grow the hair back I so intently prayed (my exact words where “please let my hair grow back in thick and strong”) but I wanted my life to be saved, and it was. Through better coping mechanisms, new perspectives and improved attitude I can at most times regard my hair situation with some indifference and strength. Huge milestone, “Thank You God.” [click to continue…]

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Hi everyone, I just wanted to announce that we will be holding a women’s hair loss support chat next Wednesday July 9, 2008 at 6:30pm – 7:30pm  PST

The chat will be taking place in our network. To to sign up for the event go to: http://community.womenshairlossproject.com and login to your account, or sign up for an account if you haven’t already (it only takes a minute and it’s of course free). Once you are logged in, click on “Events” in the top navigation toolbar, and then click on “Browse Events.” You will see “Women’s Hair Loss Support Chat” listed there.  Click on the link to view the event and the women who will be attending, you can then click on “attend this event” to add yourself to the group of women already participating.

Join the Women’s Hair Loss Support Chat to learn, share, and lend support to another woman with hair loss. Hope to see you there!

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Synthroid & Hair Loss – Leah’s Story

by admin on June 23, 2008

Synthroid & Hair Loss - Leah's Hair Loss StoryFirst let me say, you are in my thoughts and prayers and I am so sorry you are feeling so sad about your recent shed. I really do understand and I know how much sorrow hair loss causes. I just wanted to share my experience regarding synthroid and tell you that you might consider synthroid as the cause of your hair loss. I have been experiencing hair loss now for about 5 years; it has been one of the hardest things that I have ever had to deal with. My hair loss started immediately after I began yasmin (yes, I know it’s supposed to be low androgenetic but for some reason it caused my hormones to go crazy). Immediately after taking it, I started loosing my hair, my back became overrun with cystic acne and I started growing excess hair on my back. Up to then, I had never experience any kind of acne or imbalance in my system. I got off the pill, but my hair loss never stopped, my scalp started burning and my hair steadily thinned. Of course I went to the Dermatologist who suggested Rogaine, my doctor said I could start spiro (I wasn’t there yet), I read Geoffrey Redmonds book “The Hormonally Vulnerable Women“. At the time, I was trying to get pregnant, but I decided I would try to go back on the pill when the time came. Fast forward a few years later, after stopping breastfeeding, my hair shed started up again. I decided to go on Yaz this time and I have to say, a week later my hair loss stopped and had been stable for 6 months.

During the years that my hair had started to thin, I promised myself when I saved up the money I would go see an Endocrinologist who might be able to give me insight on my hair loss. I made an appointment with a respected Endo in Dallas and I was excited that he might be able to at least tell me why I was loosing my hair, although I suspect AA since my hairs are not coming back. He ran $2,000 worth of bloodwork and found nothing significant. My thyroid was a slightly elevated at 2.8 and I was a little anemic – my androgens were fine, probably because of the Yaz I was taking. He gave me a prescription for synthroid and spiro. Several days after I started taking synthroid my hair started falling out, several months later, it started heavily coming out and I was right back where I was four years earlier, panicked and very depressed. I went back three months after starting the synthroid and he ran $500 worth of more test to make sure he didn’t have me on too high a dose of synthroid ( I was only taking 50mg). My thyroid came back 1.7, everything seemed to be great. [click to continue…]

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More About Spironolactone - Success StoryI got an email from Tracy regarding a post she found on another website about a woman writing about her success with Spironolactone, so I’m posting it here for all of you. Thanks Tracy for this great find!

Hey Y,

I read the new story on the front page on the website asking a question on the effectiveness of spiro. I came across this blog entry by someone on soulcysters.com which you might want to post:

I just want to post my SUCCESS STORY here regarding PCOS and hairloss. I know this is something that is so devastating to many of us PCOS women and seems to respond slowest to treatment, so here’s my story….

On December 4, 2003 I went to get highlights and my hairdresser told me I was “thinning” on top. I had no idea. My hair was always long and thick, my pride & joy. Now thinning? Huh??? Sure enough after examining it under bright lights, the crown showed signs of diffuse thinning… I was DEVASTATED. I had the good sense acknowledge that thinning hair on a woman is not NORMAL, and thus there must be an underlying medical condition with was causing the loss. I researched and researched until my fingers were raw, and everything kept coming back to me saying “PCOS unmasked by coming off the BCP” .

I went to many doctors and none could confirm my self-diagnosis. After 4 months, I had gone from “thinning” to downright “Balding”. My self-esteem hit rock bottom, and my weight ballooned by 30 lbs. I was devastated. I was having anxiety and depression which I have NEVER experienced before in my life, and it stemmed from my hairloss. Having great hair had always been my crutch if I was feeling too fat or too zitty, oh well, at least I had this really great hair, right???? Luckily my husband and mother intervened at this point, and to make a long story short, I got into an Endocrinologist who said PCOS right away and started me on aggressive treatment. That was March 29, 2004. [click to continue…]

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