support group

Finding Peace, Strength and Friendship

by admin on January 24, 2010

As most everyone who frequents this network knows, I started this site in 2007 during one of my darkest and loneliest times. At that point, I had already been dealing with hair loss for 8 years, but things had taken a drastic downward turn and down I fell into the hole of isolation.

That was then.

Since that time I have had the chance to interact with so many women that have touched my life in such profound ways. I have discovered just how strong women really are, and I have learned so much.

By being able to unite women with hair loss, and helping them to find support and understanding, I have found just that for myself… understanding and support, and I no longer feel alone.  I have met a few women from the network, in California and New York, and each time it has been a truly wonderful and amazing experience.

I just wanted to say Thank You to Everyone. Thank you for helping me to find some inner peace, a strength I never thought existed, and friendship that is pure and true.

You have changed my life.

It’s a new dawn, it’s a new day, it’s a new life.. and I’m feeling good
~Nina Simone

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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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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 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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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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So I am starting to go through a bit of a shed once again. Still not terrible and much better than the last 2 years, but a shed none-the-less. Here is my lemon into lemonade update. As most everyone probably knows who has followed my story, I lowered my synthroid dosage awhile back since I felt it was contributing to my excessive shedding. The shedding slowed down dramatically and I’ve been trying to enjoy each day that I don’t see a gazillion hairs laying in the sink after a comb through.

It has been probably a couple weeks now where I’ve noticed my hair starting to shed more and more. But I’m still doing okay, why? Because the hairs that are shedding are full length, long and strong terminal hairs. This is such an improvement for me. In the midst of my most horrible shedding time, my hair would shed all different lengths of hairs, one inch long, two inch, four inch, six inch, 1/2 inch and some that even looked the size of arm hairs. That would depress me to no end because I felt my poor hairs were not getting even the slightest chance at a decent hair life cycle. They were exiting my scalp way too prematurely, so any new growth would just fall out. Shedding long hairs, while not pleasant either, means that my overall hair cycle is improving and stabilizing. I least that is how I have decided to interpret it! It keeps my mind healthy and strong, and allows me to continue on with my days. So whether it is true or not matters very little, all that matters is what my mind believes. :)

Be positive, be positive, be positive.

Also, just a reminder, tomorrow (Thursday April 10th) is our first women’s hair loss support chat meeting at 6:30pm – 7:30pm PST. If you are interested in joining us, sign up in advance for an account in the network. http://community.womenshairlossproject.com/

You’ll need to login to your account tomorrow at that time and click on the “Chat” link in the top navigation bar. Hope to see you there!

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Women's Hair Loss Support Chat Thursday April 10th 6:30pm - 7:30pm PSTI’ve finally set up the time to have our first Women’s Hair Loss Support Chat. The date is Thursday April 10, 2008 at 6:30pm -7:30pm PST. I’m hoping that this time and date works out for the women who are interested in participating.  I am very much looking forward to getting to chat and interact real time with the women of The Women’s Hair Loss Project so stop by to say hi! I will do my best to answer any hair loss questions you may have, and of course share with you my experience with various hair loss treatments.

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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Women's Hair Loss Support Group - Need Your InputHi everyone I’ve finally gotten over my sickness, and I want to thank you guys for your well wishings, I really do appreciate it. Being sick stinks, and I think I have a lower immune system than most so I’m more susceptible to all the germs floating amidst us out in the world. But on with my post…

I received an email a little while back from a woman named Lisa who was interested in starting a support group for women with female pattern hair loss. Here is her story:

I’m 29 years old and have dealth with hairloss since around twenty years old. I have AGA and am going through Tefflogen Effluvium for the 2nd time due to a miscarriage. I have gone through all the motions and emotions that women deal with hairloss. I have tried numerous types of treatments and am currently just using the hair laser treatment, AGAIN, at the suggestion of my husband. I said I would try one more time and if it didn’t work I will start looking for hair replacements, he is hesitant for that to happen. My hair loss is diffuse and I just don’t think its going to return to the thickness I once had.

Now, I want to try to help women, as you do, with your website. I am interested in starting a local support group for women with hair loss, specifically , with FPHL, AGA. Do you have any suggestions or someone I could contact to help jump start this project. I just don’t think there’s enough support for women like us and its time we we act locally. Thanks so much for your efforts, its help me greatly in dealing with the ups and downs of our affliction. -Lisa

I don’t have much experience with how to start live support groups since I’ve never been to one or started one either. I think a good place to start is to sort of get a feel for whether or not women with female pattern hair loss would attend. So the question is, if there was a local support group in your area where you could meet with other women with female pattern hair loss would you want to attend? Next would be finding people in different locations that would be willing to be the “host” or, really the go to contact person for that area. Then all that would be left is putting the word out, which I would be more than happy to use the Women’s Hair Loss Project for posting a bulletin of different locations that are offering support groups. Also Craig’s list would be another great place to post the support group listing. Lisa, where do you live? Why don’t we work on your first support group in your area. If anyone else has any ideas or suggestions on how to get this going please leave your comments and suggestions. I think it is a great idea that you are trying to launch this project, you are right, there really isn’t enough support out there for women suffering with female pattern hair loss, so I’ll help anyway I can. You are the same age as me, and have been we’ve have probably been losing our hair for about the same length of time since you indicated you began losing your hair around the age of 20. Is your husband supportive of what you are going through? Would he support you if you decided to wear hair? It is just awful to have to deal with this… 29 isn’t when we should lose our hair, and certainly not at 20, but I try and always look toward the positive and all that I am fortunate to have. I repeat to myself that “I am not my hair” and I need to live for today because tomorrow isn’t promised to any of us. Obviously easier said than done, but I still try. The worst was feeling alone, but we aren’t, there are so many women out there like you and me. I have received countless emails from women, more than I ever imagined I would. I promise to post every story that has been sent, it just takes time to get to them all. Each one is unique and yet so alike. I hope that you will be able to organize this support group in your area and I’ll help in anyway I can.

~Y

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Looking For A Hair Loss Support Group

by admin on October 5, 2007

Looking For A Hair Loss Support Group

Question:

I am 40 years old and I am bald. I began losing my hair in March of 2007. It has grown a little then falls out, it falls out all over. Starts out in patches then completely goes bald (which is where I am now). I just would like to know I’m not alone. I am looking for a support group in my area.
Thanks,
Gina

Answer:

Dear Gina,

You are definitely not alone. There are unfortunately an extremely high number of women who suffer with hair loss. According to The American Hair Loss Association that number is around 40 million. That makes you very much NOT alone.

As far as support groups, currently the only ones I am aware of are being done by a non profit organization called “Bald Girls Do Lunch.

Their next event is being held in New York City on October 7th and is called “Alopecia Areata Day of Beauty.” The fundraiser is being held to raise funds to support their lunch meetings across the country.

After that the next meetings will be held in Scottsdale, AZ on October 13 and then Philadelphia, PA on November 3rd.

More About Bald Girls Do Lunch:

Bald Girls Do Lunch, is the only non-profit dedicated specifically to helping women with the auto-immune hair loss condition Alopecia Areata. Visit the website for more information about the lunches and to read testimonials. [click to continue…]

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