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How many of you have total regrowth after being alopecia totalis
I am so tired. I don't have the energy to do anything. Don't want to see anyone, I want to break all the mirrors in my house so I don't have to see my face. The person I see in the mirror is not me, that is not the Carol I know. I want to see my black, thick, beautiful hair again. I am very desparate. I have a wig, although people tell me it looks very natural, but to me, this is not my hair. I am still not in the acceptance stage of this conditon. Lately, I have been noticing my eyelashes are coming out too. My eyelashes..SIGH.I LOVE my eyelashes, they make my eyes beautiful. I had this condition for 2 months already, I have lost about 70% of my hair, I am seeing my scalp. I feel so ugly, so worthless. I have have corticosteriods in my head for about 6 weeks already, all I see are FUZZ. VERY VERY VERY VERY thin short hair. Will this thin hair return to their regular size? If anyone has regrowth with alopecia totalis, how long does it stay? How long does it take to see REAL regrowth of hair? Half a year? One year? Some days are better than other, sometimes I think it is JUST hair and at least I can still do everything I am still able to do. Other days, when the weather is nice, I would like to dress nice and go out with my boyfriend, but with my hair, I am always in hats. I am so tired, my life now is seeing so many doctors, I have tried chinese medicine, but it doesn't seem to work. Can someone please help me? I am really depressed.
Replies to This Discussion
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Permalink Reply by Mary on
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Carol...I know how you feel. I was exactly where you are at the end of 2007 and beginning of 2008. I was picking up handfuls of hair in the bathroom every day, watching the bald spots expand quickly, and sinking further into serious depression. I thought my life would be over if I lost all my hair.
Finally, at the end of January 2008, I took control and shaved the remainder off (you can see pics on my profile page). I felt better right away, but I then I started to worry about losing my thick eyebrows and lashes. When that happened a few months later, I got tattooed permanent makeup. I thought my life would be over if I was bald. Then I thought it would be over if I lost my eyebrows and lashes. You know what...here I am a year later, and I have a great life! I go everywhere bald. I teach dancing bald, and go scuba diving, and hiking, and shopping... and life is good.
Yeah, I don't look like I did with hair, and I never will....and it sucks big time!!! I still get down or angry about it sometimes. But, acceptance is everything...this is who I am now, and I'm making the most of it. I wear big earrings, and nice scarves and have gotten used to my "exotic" bald look (check out my videos "Alternatives to Wearing a Wig" and "Living a Bald Life" on YouTube.) My friends all accept me as I am, and I don't have to hide anything or worry about anyone "finding out". Strangers either ignore my head, or ask about cancer....big deal. I made cards that I hand out to people who ask. I hold up my head in public, and act as if nothing is out of the ordinary - because for me, it isn't.
It helps me a great deal to remind myself how lucky I am to ONLY have alopecia. I have friends who have diseases like cancer and MS (one friend died in December from cancer). Every time a woman comes up to me in public and asks me if I'm getting chemotherapy, I think "what would a woman with cancer give to have alopecia instead of cancer?" Lonnie is so right - it's just hair and the key is not letting the lack of hair define you!
Hang in there...a year ago - in April 2008 - I was at a theater performance wearing a wig (I tried wearing them for about 5 months). The theater was hot, and sweat was dripping down my face. Finally, I tore the wig off, threw it on the floor, and shouted "F#@k!", then started to cry convulsively. Flash forward to today - I'm happy in my skin, go everywhere bald, and never feel ashamed (or hot!). The most important thing for me has been simply not caring if anyone knows I don't have any hair. It's the new me, and I'm grateful every day for the good health I have.
Sorry if this was a bit long....I wish we could all see each other in person. Reading posts here, seeing photos of other women bald, meeting Thea at her Bald Girls Do lunch events, all gave me tremendous support. I wish I could hit a "fast forward" button and get you to where I am now. Hang in there...it will get better.
Mary
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Permalink Reply by Traci Brogan on
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Hi Carol, I totally feel your pain. I had alopecia in high school but just a few patches. My first year in college I lost all my hair and wore a wig. Then came the eyebrows and eyelashes. That was the worst because then people thought I had cancer. It sucks! After about 3 years, out of the blue, my hair started to grow back. It stayed that way for almost 20 years until now. It started with a few patches this past fall. I had the shots and it gew back and I thought I was past it. Then the end of Feb I received the news that my office was closing. That obviously caused a lot of stress in my life and once again my hair started falling out, except this time it is happening really fast. I just ordered a lace wig online and can't wait for it to get here. I don't understand why losing your hair to alopecia is worse than losing your hair due to cancer treatment! Why is it such a stigma for me??? I lost my hair due to chemo and it really was no big deal but this for some reason is. I guess it's because you have no control over it and it's just so unpredictable.
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Hi Carol,
Please have a look at the testimonial from YouTube, about a woman who was cured from Alopecia Totalis reaching total regrowth.
http://www.youtube.com/watch?v=XsLLEe-R5hc
Shahar.
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Shalom, Shahar. I see that on your YouTube profile page you have a still photo of the young woman, Idit, from the video. Are you Idit, who is shown in the video?
I also see that you have joined Alopecia World. If you are not Idit from the video, do you have Alopecia Areata, or are you simply marketing Mr. Gonen's remedy here?
I am as excited as anyone about the possibility of a "cure" for Alopecia Areata, but I am very skeptical about the large number of sellers online who claim to have an herbal remedy. I think that if ANY of them were successful in scientific, double blind tests, we would know about it. It would be all over the news.
Has Mr. Gonen's herbal treatment been subjected to verified double blind testing? Has the Technion in Haifa or the Weitzman in Rehovot, or any other Israeli institute done any testing of his treatment? If not, why not? If so, what were the results?
If there has been scientific testing by any of the fine institutions in Israel which has confirmed the effectiveness of Mr. Gonen's treatment, please share that information with us. It's no problem if it is in Hebrew - I have friends in the United States who are native speakers and will translate the results for me.
Todah,
Mary
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Permalink Reply by Eric Graff on
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I had alopecia totalis for 3 years. The dermatologist told me that if I have hair loss below the neck it will not come back. I took a job with a friend working Outdoors and after 2 years my hair started coming back. For some reason I believe that the sun played a big part in my hair coming back. I wanted to let others know that it may be possible to get your hair back. If you have any questions. Please reach out to me Eric.
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congratulations on your recovery!
how long have you had your hair back?
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3 years now. The only thing I can think of was being in total sunlight and sweating my butt off.
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I had alopecia universalis for 3 years. I was told by the doctor I would not get my hair back. I quit my sales job. Started working on a roof repair business being in total sunlight for days weeks years. Hair was all white but I started noticing that it started growing faster and faster. One day I woke up and my hair was completely black in color and all my hair grew back within 2 months. Chest legs,arms eyebrows and a super thick head of hair. I was in total shock didn't know what to do at first but I said to myself it's a miracle. It has now been 3 years and still no signs of hair loss. For some reason I believe it was the sunlight supposedly it gives you vitamin D and somehow cause my hair to start growing back.
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Yeah, Eric!! I am sooo happy to hear your story. My son lost all of his hair quite quickly nearly four years ago, at age 16. He had some growth when he was working in the sun and sweating-- and then the weather changed (in Scotland) and he lost it. It is growing again slightly now. Much slower, but he is taking high dose vitamin D. He has light eyebrows back (which makes a big difference) and is growing eyelashes too. He goes to a sauna when he can and is drinking a high silica content mineral water called Fiji to get rid of aluminum. We are CERTAIN his hair loss is related to vaccination with a vaccine containing an aluminum adjuvant *his identical twin brother did not have the shot and has never lost a hair. Please avoid any vaccines! This is also what happened to health coach Yuri Elkaim -- I heard him say his hair regrew and then , after a tetanus booster (which contains aluminum adjuvant) all fell out again . Avoid TOXIC aluminum !! Cheers and I am very encouraged by your story. Thank you!
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Permalink Reply by Stars-r-Aligned on
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Wow that's amazing... I need to go outside and. Hope for the same results lol..exercising defintely promotes hair growth and then the vitamin D from the sun only helped :)
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I got alopecia universalis 1 year ago, I'm a 32 yr old man, I miss my thick brown hair any lovely Manley beard.
Proper sucks. I don't except it. I never will. I have happy moments, but have come to the sad reality I'll never be happy with me ever or confident (which I was) ever again.
Oh and ALL my hair fell out with a 2 week period.
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