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Where's All the Alopecians That Have Grown Their Hair Back

Discussion in 'Women's Alopecia Areata' started by Karen, May 13, 2006.

  1. Karen

    Karen Guest

    and kept it?

    I think that's what's bothering me. I couldn't put my finger on it yesterday what was making me so upset. I had a derm appointment yesterday and she said Well, Kar, I just lost a patient, but found a good friend. Call me in six weeks, let me know how your doing. This is your last set of shots. Ok....:::: should I be doing a happy dance now? How come I'm not? How come I think the bomb will blow - it's just a matter of time? Where are the Alopecians that have lost their hair and it came back and they lived happily ever after? Where are they? How come no one comes on these boards and says yes, I had alopecia it grew back this is what I did?
     
  2. Joann

    Joann Moderator

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    ((((Karen)))) Happy Mothers' Day!!! :)

    I understand your feelings. It will take time before your fear of the Alopecia Areata flaring up again leaves you.

    There are many Alopecians who do regrow their hair and continue to be in remission. I agree that it would be so comforting to others if they would come back to tell of their success. Unfortunately many are just glad to move on and not think of others who they would be helping so much if they shared with them.

    Just off the top of my head I can think of two young women who were AT and regrew their hair and are still in remission. I met them on the MSN AASC. One came back to share her pictures of her new hair and still posts messages from time to time though we haven't heard from her in awhile now. The other is the daughter of one of the assisstant managers on the site. Her Alopecia Areata continues to be in remission . I think it is almost 2 years since her hair regrew from AT.

    One thing I want you to note is that neither one chose to do treatments and yet regrew all their hair.That's why I tell everyone that there is always hope even in the most seemingly hopeless cases.

    I want to wish you a relaxing and joyful day free of worry about your hair. I hope your family spoils and pampers you .

    All my best to you Karen. ((((Big hugs)))) Joann
     
  3. Guest

    Guest Guest

    Promise to

    I will come back and share my success. In fact my life will be dedicated to helping people with Alopecia Areata,At,Alopecia Universalis. I am an alternative medicine practitioner so I am working hard to figure out ways to help this condition. I treated one patient with herbs and acupuncture and she had great success. I heard through the grapevine she is in remission but have not seen her in a while. I did not have much luck and success for myself with acupuncture but it did clear up my fibromyalgia and most of my eczema.

    good luck
    I truly believe there is a cure for every illness we just do not know it yet.

    peace
    Alex
     
  4. Lily

    Lily Senior Member

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    I think there are a few that post from time to time, but I can't think of someone who has Androgenetic Alopecia/FBP (like I do) with no other complications that has posted a success story...not saying it hasn't happened, I just can't think of one offhand.
     
  5. ScaredSally

    ScaredSally Guest

    I think because with any type of alopecia there ISNT that many success stories !!! sorry to be a pessmist to some people but from my years of searching, talking etc to people results that are achieved are pretty .. rubbish !!
     
  6. Karen

    Karen Guest

    I think your right Joann about living with the fear that it might happen again. Every day gets a little better. I think now I realize what put me in the predicament (stress) in the first place and now I know I can't get like that again.
     
  7. Joann

    Joann Moderator

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    Hi Karen, :)

    I think it would be safe to say that anyone whose hair has regrown after a bout of Alopecia Areata has this thought. As time passes you become more reassured .

    Karen, you will have times in your life when you are stressed again. That's the way life is. The difference now is that you will recognize it alot sooner and now you have develped ways to relieve the stress.

    I feel very confident in saying that your Alopecia Areata is definitely in spontaneous remission at this time . I hope it remains so forever.

    All my best. Hugs. Joann
     
  8. Karen

    Karen Guest

    ((((Joann))))

    Thanks so much!
     
  9. IONLYWISH

    IONLYWISH Guest

    Hi Karen,
    I know I will continue to experience stress, but the difference for me will be the way that I handle the stress. This was a wakeup call for me. This time it was some of my hair that was gone. If I let myself get out of control again the damage may be to my heart. I don't want stress to lead to a heart attack. I've got a different perspective now and I intend to stick to the changes I have made in the way I handle the stresses of everday life. I guess time will tell.
    Twins
     
  10. Karen

    Karen Guest

    Twins,

    I so agree about the wake up call. I'm still doing my aorbics classes and trying very hard to eat right and not be so much in a rush all the time and can't tell you what a difference it makes to take time out for yourself. Everything looks better when you do.
     
  11. Guest

    Guest Guest

    Some encouraging thoughts

    Dear All - I've been reading some comments about the lack of "success" stories shared by people whose Alopecia Areata/AT/Alopecia Universalis has gone into remission for a long time. Here are my thoughts: I am almost 30 now, and developed Alopecia Universalis when I was about 9. I don't remember everything that happened but I remember it was only a matter of months before Alopecia Areata revealed itself into Alopecia Universalis. Needless to say it was not the easiest thing to deal with, and back then (20 years) ago i suppose the treatment was not as advanced (?) because it didn't work. So I went on with my life wearing a wig, not knowing whether the Alopecia Universalis would go away . . . but when I was about 17 or 18, after almost 10 years of Alopecia Universalis, my hair began to grow back (with the help of applying the gel-like substance from a natural aloe plant). By the age of 19 (although short) i was able to wear my hair short, although single patches came and went. I consider myself almost undeservedly lucky and I thank God every day ... for the last 10 years I stopped regularly checking for patches ... until a few weeks ago - I discovered a small (dime-size) patch which I hope (like the others when I was 19-22), will grow away and is alone. I checked for any hair growth in the patch as well as for exclamation point hairs and so far I believe I'm ok . . . that being said, I want to say that I understand everyone's feelings and there is not a day goes by (especially recently in these last few weeks) that I don't think about my hair. a part of me dreads the return of Alopecia Areata/Alopecia Universalis but another part (a more mature adult speaking) tells me that stressing may just make things worse. That voice is also telling me this, which is my message to you all: remission of Alopecia Areata/AT/Alopecia Universalis permanently or for a long period of time is certainly possible and happens, but perhaps real success is measured by how strong we've become as women who have to deal with this disease, how well we have managed our lives despite of it and how well prepared we are to deal with other adversities in live. I salute all of us on this forum. Peace.
     
  12. IONLYWISH

    IONLYWISH Guest

    Welcome Blue,
    Thank you for your encouraging post. It is good to hear that after ten years of Alopecia Universalis you had regrowth. That is wonderful news. You mentioned aloe. Was it applied directly from the plant? My grandmother taught me to cut open an aloe plant and rub it directly on a sunburn. What made you try the aloe? How long did it take before you saw evidence of regrowth? Sorry for all the questions, I just think that this is very interesting. Thanks again.
    Twins
     
  13. at_a_loss

    at_a_loss Guest

    Welcome aboard Blue!!!!

    So glad you stopped by to share your story and hope you stay for awhile...

    I also am interested in the use of aloe... do tell more... ;)
     
  14. New Girl

    New Girl Guest

    I have a co-worker who had Alopecia Universalis, head completely bald, lost eyebrows, eyelashes never had to shave ANYTHING again.
    This was about 4 years ago when she was in college. She now has a full head of hair, shoulder length and all the rest of her hair back except 1 eyes lashes, which until she pointed it out I could not even tell.

    She did the cortizone shots until it all came back.
    She has very tiny spots that "act up" but she knows to watch for them and she gets a couple shots and shes back to normal again.

    So this is not a story of a complete recovery or remission, but hey she looks awesome, not one spot on her head where you would think she is even thinnning.

    So I use her for my daily inspiration to hope mine will all be back someday.
     
  15. New Girl

    New Girl Guest

    Sorry forgot something else.

    I think they dont come to the boards like this since they are "cured" and dont need a support group.

    Thats my thought.

    So I do think they are out there. Sorry I am a "glass half full" kind of person. :)
     
  16. at_a_loss

    at_a_loss Guest

    You are right... there ARE women out their that have regrown their hair... it IS possible... hell... Kimby and I have done it three or four times in our lifetimes... :lol:


    I also think alot of it is in how you view yourself after regrowth... do you want to continue focusing on your hair? Do you want to relive the past? OR do you just want to move forward??
     
  17. Guess what Mel....I've seen my hair come and go more than that.

    Let's see my bouts started at age 5. They came and went every year until I was 13. Another bout at 18, 20, and 28. So guess I've seen my hair come and go more than a dozen times in my life. Even now I see the small patches of regrowth. Although the remissions don't seem to last long enough for a full head of hair to grow at this point. :roll:
     
  18. at_a_loss

    at_a_loss Guest

    whatever... three times... twelve times... you are sooooooooooo particular... :roll:

    {{{ hee hee }}}

    My POINT was that it IS possible... geesh... women...
     
  19. Karen

    Karen Guest

    Welcome Blue

    Your post was so positive and I am glad to hear about your regrowth. I would also like to know more about the aloe. Can you tell us more about it?
     
  20. Gorgi

    Gorgi Guest

    Success Stories

    I must make a confession. When I had remission from Alopecia Universalis by taking immunosuppressive medications (cyclosporin, cyclo for what it did to my stomach after a while), I really FORGOT how awful I felt being bald and having no eyebrows and eyelashes. And it didn't take long for that to happen - for my memory to help me forget the pain, the embarrassment, the feeling of being on the outside of the sweet shop, nose pressing into the glass.. I felt cured. Even tho I knew my chances of losing my hair were like 100 percent if I stopped treatment, I tried. I slowy tapered the drug.. and on January 5, 2006, after 6-1/2 months of short, healthy, curly hair, long eyelashes and pretty fine eyebrows, plus all the body hair again, I found the 50-cent plus-size patch of hair loss behind my right ear. It was downhill from there, of course, and today, I am Alopecia Universalis again.

    And when another drug was offered to me to try, and anti-inflammatory/antibiotic drug with a minimum of success for alopecia, I rejected it on the basis of not wanting to grow my hair again only to have it fall out again.

    That was 6-1-2 months ago. Last year at this time, I had my first HAIRCUT in 10 months! I "highlighted" my gray hairs dark brown again! I used mascara and eyebrow powder. I shaved my legs and under my arms. I was back.

    I stayed for 6 months. Then I went away again. I'm talking about my appearance, not my spirit. I discovered from having no hair to having hair to having no hair that success is not measured in hair, but in the ability to live with our imperfect bodies and love the spirit we are.

    My husband kissed the back of my bald head yesterday. I told him don't do that. He said I will do that because it is you.

    That said, and as noble as I might sound, as together as the above reads, I am going to try taking the different drug because it is one I can take 4-ever if I have to. If it works, I will have it all again, and probably disappear from this site cuz I will forget again. If it doesn't work (I'm giving ig 12 weeks), then here I will be, mad as hell that I'm still bald and having to deal with a husband who insists on kissing my bald head.

    Silly wabbit.
     

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