Women’s Hair Loss Support Group – Need Your Input

by admin on December 21, 2007

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

{ 18 comments… read them below or add one }

Shanlaree January 14, 2008 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 January 17, 2008 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 January 26, 2008 at 1:50 pm

What a great idea. I will check it out! Thanks for all your support!

Shanlaree

Shanlaree February 7, 2008 at 3:03 pm

Like the new User interface. You are putting together an fantastic website, forum and on-line community!

ShanLaree

admin February 8, 2008 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 February 8, 2008 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 February 9, 2008 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 February 9, 2008 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 July 9, 2008 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 July 11, 2008 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 July 11, 2008 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 May 16, 2009 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 January 4, 2010 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

Tricia6 September 10, 2011 at 3:02 pm

Hi I’ve never done this before but my name is Tricia I’m 23 and over the past three years my hair has been thinning out on the top. Now it is so noticeable and it’s depressing I’ve had three blood tests done and all came back normal. The only thing they had recently said was that my iron was too high. Please does anyone have and suggestions or ideas? :(

Thank You!

Sara Coughlin November 4, 2011 at 3:20 am

Hi, my name is Sara Coughlin, and I live in Saudi Arabia, Riyadh. I have lost a lot of hair, apart from some hair around the bottom of my head, and I am now almost completely bald, even though I am only 19 years old. I feel so sad and depressed, and don’t know what to do. I have tried so many prescriptions for hair loss, but none of them seem to work. I have even been thinking about getting a hair transplant surgery done. I wear a wig everyday, and have told no one else, except my family about my condition. Help!

Aloka December 15, 2012 at 8:41 am

I would like to tell you my story. I’m in my 30’s and i have female pattern hair loss. It came to a stage, that i could not go in the sun because people could clearly see my crown. I felt so depressed. So i went to a Hair consultant and she gave me some medicine. They are Minoxin 5% which should apply twice a day, then Finast(A hormone tablet) 2.5 mg and Livogen 1 tablet per day, (which is an Iron tablet). Apart from this i started taking Biotin, Fish oil tablets, Calcium tablet and a multi vitamin tablet. And given two months time, i can see much improvement. Now my hair falling rate went down and i feel so good. That’s why i thought of sharing this with anyone who’s going through this. Now my doc asked me to reduce the iron intake to, 1 tablet per week. And other medicines also i’m lowering down. However i have to continue Finast & Minoxin. Minoxin help you to reduce hair fall and also grow hair. But if you stop, you’ll loose all the new hair which it helped to grow. How ever my doctor advised me, that when i get married and plan to have a baby inform her earlier, so that i have to stop taking Finast and she’ll advice on what to take. I would like anyone in my situation to get good results like mine. But before taking any medicine, please go to a hair consultant and get advice. Good Luck!!!

Ann February 5, 2016 at 8:51 am

I live in Portland OR. I have suffered from androgenic alopecia since 2008. Medical doctors (including dermatologists) aren’t any help. I’ve gotten more help through naturopath doctors and acpuncture. I found what I thought was an amazing cure – PPR protein rich plasma. I only know of one naturopath in Portland that does these treatments. It could help you. Thin hair is due to low red blood cells in your body. PRP treatments mean injections in your scalp with your own plasma to increase blood in your scalp. I also have hashimoto’s thyroid issues which means I need to be gluten free. I had extensive blood work done through a naturopath and found out I have A LOT of inflammation in my blood and heart. From what I have learned, female hair loss is due to many things; thyroid issues, low iron, hormone issues, inflammation in your body. Unless you get these things under control, treatments of any kind are not going to help.

Marie April 15, 2018 at 12:39 pm

Hi girls, I just found this website and I guess I should be very thankful that this just started happening to me. I am 66 Years old and have been under extensive stress and anxiety. Everyone says that that is what is causing the hair shedding. But it still is very scary the amount I have lost in just 6 months. My heart goes out to you young girls who are experiencing such hair loss. You are so right ….way to young to have to deal with this. I have had blood tests done and everything came back normal. I was thinking my next step should be a dermatologist but from what you are all saying they don’t seem to have the answers either. Every says stop stressing so much but this is such a drastic change that I can’t help but stress! I know a couple of girls who are dealing with this and they were put on a prescription because their vitamin D was so low so I immediately added extra vitamin D to my daily routine. I do notice that my nails are growing again which goes hand and hand with hair growth. I also see some new hair coming in but I am still shedding at the same rate right now!!! I love how some of you young girls are able to handle it with a more positive attitude than I have been able to acquire! I would love to touch base with some of you or join whatever forum you may have going. Talking to people going thru this would be far better than those who just don’t understand it at all! Please, if anyone sees this could you please reach out to me! Hair loss is depressing and discouraging at any age but I am most sure that you young girls have more of a right to be discouraged than I!! So sorry for everyone going thru this but nice to know that there are others that would understand! Thank to all that take the time to reach out. Like you I really need some positive support and advice! Thanks again, Marie

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