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Hi 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
Technorati Tags: female pattern hair loss, support group, womens hair loss

{ 13 comments… read them below or add one }
Shanlaree 01.14.08 at 11:35 am
Does anyone know of any groups in Oregon? Or anyone in Portland that would be interested in connecting for a conversation?
Thanks!
Shanlaree
admin 01.17.08 at 9:12 am
Hi Shanlaree,
I unfortunately don’t know of any groups in oregon, however, I will be starting a weekly online instant messenger chat through this site where we can all meet at the same time and discuss everything and anything.
~Y
Shanlaree 01.26.08 at 1:50 pm
What a great idea. I will check it out! Thanks for all your support!
Shanlaree
Shanlaree 02.07.08 at 3:03 pm
Like the new User interface. You are putting together an fantastic website, forum and on-line community!
ShanLaree
admin 02.08.08 at 12:23 am
Hey ShanLaree, Glad you like the new look. Something a little different on the eyes. Thank you so much for your kind words about the site and online community. Love having you here!
~Y
Veronica 02.08.08 at 5:41 am
ShanLaree,
I live in Portland and don’t know of any support groups…but would love to chat with you about any ideas you have… Let me know! I’ve been to every hair replacement center this city has to offer and may be able to offer you some information!
-Veronica
Shanlaree 02.09.08 at 10:27 pm
Veronica,
feel free to email me to chat. shanlaree@gmail.com.
Or look up my profile on Hairloss project network /community page. Would love to chat with you more.
Shanlaree
Shanlaree 02.09.08 at 10:29 pm
Thanks Y, I would love to call you some name other than admin and Y. Do you have another nickname I or we can use?
Best,
Shanlaree
Carly 07.09.08 at 2:37 pm
I love the idea for a weekly online instant messenger chat, and would really like to sign on, and be a part of it. I have suffered from hairloss for a good 9, 10 years now, and was just searching Google for an online support group, and came across this site. I’ve also been thinking of an in-person group, but thought online would be a good place to start, since it’s sometimes easier to talk about this anonomously, at least in the beginning. Then later, maybe I’d get the courage to meet others in person, who also suffer from this problem.
Please let me know when the instant messenger talk will be available, and I’ll definitely try and be there. Will that be specifically for a hairloss discussion, or would I have to search for a specific forum separate from the IM to discuss.
Thanks,
Carly
Scott 07.11.08 at 10:59 am
My 22 year old daughter lives in Portland, Oregon and was diagnosed a few days ago with Alopecia Areta. Presently, she has one bald spot on the crown of her head about the size of a silver dollar….it came out of nowhere, as she otherwise has a full head of healthy, thick hair. As many have surely felt, she is panicked about what may happen next. I have two questions we would deeply appreciate responses to. (1) Does anyone know of any instances where the hair loss stopped with just one patch? (2) How can we/she become part of your forum, so that she may communicate with others who are afflicted with this condition? Thank you for being a resource to turn to.
admin 07.11.08 at 11:17 am
Dear Scott,
Thanks so much for taking the time to write on behalf of your daughter. I know how frightening and scary any type of hair loss be for any woman of any age, but I do think it is harder when you are younger. I can speak from personal experience that, yes it can just stop at one patch and regrow in. My cousin’s 5 year old daughter has alopecia areata and she will get one patch from time to time and so far it has always grow back in.
There are several women in our network http://community.womenshairlossproject.com that also have alopecia areata and who I am sure would be able to provide more in depth knowledge about your daughter’s condition. All the women here are so incredibly supportive so I definitely encourage her to sign up. Being a part of the network provides a more personal one on one way to communicate with different women.
Please feel free to post any time with any questions you have, if I don’t have the answer I’m sure someone else will.
All The Best,
~Y
maria 05.16.09 at 1:21 pm
hi i have had hereditaty hair loss in my family. the females have a lot of hair loss. unfortunately i just cant seem to get over it that i am one of them. my hair has always fallen but until now at 32 years old now you can see it alot. i hate going out to where there is light or sun because i know that it looks much worse my see thru hair. help i need help or just to know someones advice
Breanne 01.04.10 at 7:11 pm
I am 20 years old. I first noticed that I was losing large amounts of hair about 10 months ago. It is increasingly thinning. I have tried all that I can think of. I first went to the doctor and he sent me out saying I have thick hair. I do, naturally have thick hair, but I, myself, know that it is thinning. After seeing the doctor, I went to a dermatologist thinking maybe I had a fungus or something on the skin. I went for a couple months to find that they couldn’t help me, but that I needed to get my blood tested. They checked my hormones and thyroid, all was fine. My testosterone was on the edge of being too high, but then, they still said it was fine. I do have panic attacks often and am easily stressed out….now I am realizing that all this is causing major depression. The panic attacks, being stressed but most of all now, the hair loss. I am also getting acne very badly which I’ve never had before, but that’s a different story. I just want to know if any of you have any input? I am at a loss. I feel like I’m too young to be balding, I eat well and exercise often. Any input you guys may have will help. Thank you so much.
Breanne