alopecia

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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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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Our Brave New World – Support Group

by admin on September 19, 2008

Brave New WorldHi 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

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An Inspirational Hair Loss Video – Kylie

by admin 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.

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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!

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