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…]
by angela on October 26, 2008
As I was surfing the net this morning I came across this little, almost obscure article. Of course, since it had to do with hair loss, I clicked it, and to my amazement (although I shouldn’t be surprised) here I am reading about the Hepatitis B vaccine and HAIR LOSS!
I am posting the links below to the articles that I read this morning so you can go check them out. It pisses me off that hair loss is NOT one of the side effects that they warn about when giving people the vaccine. Studies are being done about the psychological effects of hair loss and women and yet no one thinks that announcing that it does in some cases cause hair loss would be important for US to know?
Have any of you ladies been vaccinated? Now the reports that I have read predominately talk about the Hepatitis B vaccine, but can we be sure that this is the ONLY vaccine that causes hair loss? How about the flu vaccine? or the one for pneumonia? How about HPV?
Can some of you ladies put my fears to rest? LOL I am so traumatized by this, that I can’t even write properly about it! Can you lovely ladies each tell me when you first started noticing your hair loss and if it coincides with ANY type of vaccination you may have received within that year? I am really curious and mortified at the implications of this!
How many college students were required to get vaccinated and THEN started to notice that their hair was falling out and thought it was just STRESS!
How many women were entering the nursing or medical profession and started losing their hair around the time of the required vaccinations?
How many teachers are out there, that are required by law as well to be vaccinated before they begin teaching? [click to continue…]
I wish this post would be something more uplifting, but that isn’t the way hair loss always works is it? I sit here during my ninth year of hair loss all puffy from the crying spree/ meltdown I’ve just endured. Why today, why now? For the most part I have really accepted my hair loss and the thinness of my hair. But I guess the pain, sadness and frustration still floats close to the surface even though I usually keep it under wraps pretty well.
So what the heck happened?
It’s been over a year since I’ve been in for my annual hair cut. My hair is way too long for the thinness that my hair currently has. I can’t go back to the salon, my hair is too thin and I would be way too self conscious. I previously confided my hair loss to my hair stylist and she was understanding and careful not to tug on my hair and also let me comb it out after it was wet. But that was over a year ago and I’m even too embarrassed to have her cut my hair in my home. On a previous visit she had told me she could do that for me, which I thought would be great, until now. Here I am, stuck, helpless and tired.
Who can just cut my hair? I need a stylist who has hair loss, who is sensitive to the issue and who lives in Los Angeles and who can come over to my house, OR a stylist who works for a salon that has private rooms. I was recommended a local place by a friend in the network (Thank you Lisa) but it is a hair replacement salon, and I am afraid that after they get a gander at how thin my hair is that they will want to push me toward that direction of adding hair to my own, and I’m not mentally ready for that yet. I just want a haircut, why can’t I get a haircut? [click to continue…]
by Y on September 19, 2008
Hi everyone, I just want to let all you ladies know about a support group that has been started by one of our newest members, Angela. She has titled the group “Our Brave New World” and has written and introduction:
“Hello my sisters! I wanted to create a group for us to explore this new chapter in our lives. I don’t think any of us ever thought when we were little girls…”Gee, when I grow up I want to be an Alopecian!” or “I can’t wait to go bald!” But here we are. Feel free to share your thoughts, inspiration and encouragement as we step into Our Brave New World.”
Please stop by the community, join the group and join us in healing. To join the network, click here. Once you are signed up and logged in, follow this link to join the group: http://community.womenshairlossproject.com/group.php?group_id=5 or just click on the “group” button you will see in the top navigation bar, then click on the tab “Browse Groups.” As always please send me an email if you have any difficulty, women@womenshairlossproject.com
by Y on September 12, 2008
This Information was posted by Joan on this topic, “Stacy’s Hair Loss Story – Searching For Answers.” There is some pretty interesting and important information here that can be further researched and discussed with your own doctor to perhaps aid in the treatment of hair loss and PCOS. I never overrule anything that may possibly help, but please definitely always consult a physician before taking anything. We are all individual and take different medications for a whole slew of other ailments, so we want to make sure that anything we take will sit in harmony with all the rest of our meds, and that there are no contraindications. Here is the post:
Hi Folks,
It’s very sad to read all of these stories, but there may be help. It is perhaps very significant that many symptoms of PCOS can be found simply with zinc and manganese deficiency. Zinc deficiency causes hair loss, poor sugar metabolism, dandruff, acne, migraine headaches, menstrual irregularities, ovarian cysts, and infertility. Manganese deficiency causes poor sugar metabolism, migraine headaches, ovarian cysts, infrequent menstrual cycles, endometriosis, and infertility. The hyperglycemia in PCOS depletes the critical antioxidants copper zinc superoxide dismutase and manganese superoxide dismutase, as well as manganese-dependent arginase, all of which are low in PCOS. [click to continue…]
by Y on September 11, 2008
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…]
by tangie on September 6, 2008
I started thinking last night about what’s left you know, before hair loss was your issue, was it losing weight or acne or your teeth or what? For me, it’s my teeth. Sometimes I think to myself that I would have wrinkles by now if I smiled as much as most people do normally. I don’t smile much because my teeth have big spaces between them. Soo, I am going to finance myself a brand new smile, yep… I’m going to give people something to look at and compliment me on and take all the power that the hair loss has away. I am within 20 pounds of my goal weight and I am not going to stop until I’ve reached it. Winter is coming and I am going to buy some adorable hats and then next spring I will make a decision on either shaving my head or getting a hair piece. And you know what, It is going to be OK everybody, it really is.
Visit Tangie in the Network
by Y on September 5, 2008
This is the original video made by Karr & Karr Productions of Kylie the day she shaved the remaining hair off her head. It hasn’t grown back in 4 years. I am in complete awe of this young woman. What courage and strength, what an incredible inspiration. Definitely check this one out.
by Y on September 2, 2008
Hi everyone, I just wanted to announce that we will be holding a women’s hair loss support chat next Tuesday September 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!
I am just about to head out the door, but I wanted to make a quick post about my exciting new way to comb my hair. I’m always looking for new ways to avoid having to constantly be smacked in the face with the fact that I’m losing my hair every time I comb my hair after a shower. It is pure torture to just stand there and watch the hair fall like strands of spaghetti from my head. The darn hair is gonna fall whether I look at it or not, and when I’m going through a heightened shedding period I’d really prefer not to watch. I need CONTROL. I’ve done the “blind comb” where I’d sit on the bed with a towel around me and comb my hair without a mirror, then I’d pick up the towel (not looking of course) and take it outside…shake shake shake.. and I’m all done! No hair loss. Crazy huh? Okay it gets even crazier.
I’m so frustrated with the fact that I’m still going through these shedding periods and I truly don’t have a lot left to lose. So about 20 minutes ago I was standing comb in hand, wet hair, and staring at the sink. It was like a duel out of an old western movie. I glanced at the toilet, I glanced at the sink and back to the toilet. The hair is gonna end up in the toilet anyways so why don’t I just shorten the trip! I squatted around the toilet and comb my hair, the hairs fell right in and I flushed them away. I don’t know if I lost one hair or 200 hairs! Oh sweet harmony that felt good! I mean seriously, really liberating.
What makes dealing with hair loss so hard is the lack of control, the feeling of the inability to do anything to make those hairs stop falling out. The helplessness. These little things give me back control. And instead of watching my hair fall out of my head, a feel a sense of relief and I go out and enjoy myself at the movies. Whatever helps you get through the day. 🙂
