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NAAF Conference- Thoughts to Share

Discussion in 'Women's Alopecia Areata' started by Joann, Jul 10, 2006.

  1. Joann

    Joann Moderator

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    Hi Girls, :D

    It's been a week since I've returned home from the NAAF conference. I would urge all of you especially those of you who are AT or Alopecia Universalis to try to attend at least one conference in the future.

    The first NAAf conference ever held had 20 people who attended. The 2006 confernce had 800. There is a feeling like no other to be among 800 people who undertand completely what coping with Alopecia Areata is like. I always come home with such a sense of well- being and strength.

    I was able to meet many friends I have made from the support groups that I belong to. The highlight of the conference for me was meeting all my good friends especially those from the U.K. and one all the way from New Zealand who I met for the first time.

    I am a telephone support contact person for NAAF. I attended a session pertaining to that and it was great to exchange info and share ideas. The main thing brought out at that session was to keep promoting awareness of Alopecia Areata and also to get more doctors and derms involved. To date they have been slow to respond though many have been given pamphlets and info for them to pass on to their patients diagnosed with Alopecia Areata. Hopefully in time things will change with them and they will take a more active part in promoting awareness.

    I attended two other sessions called : Tempted to Go Topless" (It's not what you think :D ) and Women and Alopecia Areata.

    In the Tempted to Go Topless we had women & men though the women outnumbered the men. The men at that session were all Alopecia Universalis & fine with going about without hairpieces.

    We women were at varying stages. Some who said they would not really want to go wigfree but wanted to hear feedback from those who did. Others felt putting a wig on made them feel strangers to themselves. I was especially touched by a woman there , a fellow Canadian, who ditched her wig about 10 weeks ago. She said that now she felt like it was herself she was looking at not a stranger as she felt in the past when wearing her wig. She was in tears talking about it.

    I was able to go bald in public for the first time at Mall of America. When I spoke at the session I said I would always want to have the option of having hair too especially when going out for a special occasion. For me though being able to go out among people bald will mean I have reached true acceptance of this disease that I have lived with most of my lifetime and which affected me and made me hide for so many years. I have since gone bald in Toronto but still need time to do this among my friends. I'm not quite" there "yet.

    Dotty was there as well and she also felt that going out bald felt more natural to her than wearing hair. It was great to hear everyone's thoughts & opinions. No right or wrong. Just having a choice whether it be bald, wig, or bandana .

    Attending a Women & Alopecia Areata session is always an emotional experience. There is always tears from those relatively new to Alopecia Areata and those who have had it awhile. I remember last year sitting & sobbing something I can not remember doing in all my years with Alopecia Areata. The tears need to come out because they are healing as well. Losing your hair is a very emotional & sad experience. It is a loss which takes time to recover from. There is no set time but being among other women and knowing that they know what you are talking about is so very comforting. My friend Jennie told me that when I was talking at this session the Kleenex box was being passed around our circle. Knowing that others understood me so well and could relate does so much in strengthening & healing me. Many women had husbands who loved them hair or not but still having no hair does make you question a lot of things so having supportive husbands is not quite the same as talking to other women in the same boat as you.

    The Saturday night dance was awesome. We had blast and a wonderful little boy from our AASC, only 8 years old ,won the dance contest. You should have seen the moves he could make. I sure couldn't follow
    them. :D

    I have posted the medical quesions & answers that my friend Lin took notes on. It was so kind of her to do becasue she came from the U.K. and had jet-lag at the time.

    Heaventree has already posted a summary of the vendors at the conference. I would love to have a Freedom vacuum wig to wear when I want hair. They are totally undetectable and the hair is so gorgeous. They can be a little warm for some.

    It was hard to say goodbye on Sunday to everyone. Dstance "sucks" Thankfully there will be other conferences where we can see each other again. We can also remain in touch by e-mail & phone.

    It's good to be back on Her Alopecia. I hope all of you are well & happy. Big hugs to all . Joann
     
  2. at_a_loss

    at_a_loss Guest

    Big hugs to YOU Joann!!! Words simply can not express how comforting it is to have you here... I have found myself quite a few times sitting in front of this monitor and sobbing simply because I felt so alone for 34 years and now I have met women who are JUST LIKE ME! Kimby, Joann, Joyce, Dotty... you women are my inspiration... I haven't touched your hands or smelled your perfume... but I feel like I KNOW you and you KNOW me... {gawd... here come the tears again}

    I was chatting with a fellow heralopecia.com member the other night and admitted that I had never worn a ponytail... not because I didn't want to... GAWD... I WANTED TO SO BADLY... but because it was NEVER possible for me... this beautiful lady said that she hasn't either... THAT is a connection that is an unmistakable sisterhood...

    I can not WAIT for next years convention!!!!!
     
  3. Joann,

    I don't think any of us can thank you enough for all the wonderful information you have brought back to us. I'm sure that having so many wonderful Alopecians in the same place at the same time is a rewarding supportive, and emporwering feeling.

    Much love to you for all the support and inspiration you show to everyone of us daily!!!
     
  4. JanetM

    JanetM Guest

    Joann:

    Thank you so much for the feeback from the conference. The support from the many women on this board including yourself has helped me so much through the past few months.
    Janet
     
  5. Joann

    Joann Moderator

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    ((((Girls)))) you're very welcome. Thanks for all your kind words. You made my day :D Big hugs. Joann
     
  6. Joann

    Joann Moderator

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    Melanie,

    The 2007 NAAF conference is in Washington DC right in your backyard so to speak :D

    I hope to see you there God willing. Hugs. Joann
     
  7. at_a_loss

    at_a_loss Guest

    I can't wait!!! This will be the FIRST time I will be able to swing the travel expenses!!!
     
  8. Me too.....me too!!!!!
     
  9. at_a_loss

    at_a_loss Guest

    Kim... we are going to load up a van... and pick up other women on the way... what do you think??? Sangrias all around? :D

    oops... except for the driver... :shock:
     

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