Alopecial Universalis Treatment???

Hi,
I had alopecia areata wen i was 8 yrs old. I used to get my hair bak on the patches but, i used to get a new patch on another area. Some stupid Dr. gave me wrong meds & within 3 months i lost all my hair everywhere!!! It was only after takin his meds that i suddenly started to lose my hair rapidly. Wen i was 12 yrs old, I had lost all my hair, including head, eyebrows, eyelashes. Since then, i hav been going to MANY Dr.'s hoping to get treated, but nothing worked as such. My hair grow bak from some places but then again falls.
My tough decision was to take steriods (0.5mg) only wen i was 17, as another Dr. said this was the only treatment for this type of problem. I took them for 4 yrs. I did get my hair back all over & much thicker & beautiful than before. But, i couldnt take those meds for long as it can cause really bad side effects. So, i had no choice but to leave the meds. I again lost all my hair rapidly.
Then, another Dr. told me to undergo PUVA therapy. But, i saw on the internet there is 5% chances of skin cancer & there r also chances of relapse of the hair again. So, i didnt wanna take this risk.
Another Dr. told me to get hair transplant, but, then lot of people told me that hair will still fall even after that.
Can anyone plzzzzz tell me if there is a ASSURED treamtment for Alpecia Universalis??? I really wanna get treated. I dont wanna live with this throughout life as i wasnt born with it. It was due to some stupid Dr.'s mistake. Why should i suffer coz of his mistake........PLZZZZZZZZZ anyone help me out????? I m desperate????????
I m fed of wearing wig & fake eyebrows.

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Permalink Reply by Mukti on March 2, 2009 at 7:50pm
Hello Priya,
I can understand all that you are going through. I was also desperate but have moved past it. Yes I do pray that someday all my hair will come back but in the mean time am getting on with living life! I cannot wear wigs as they are too hot for me. I wear scarves.
I was wondering if you have tried ayurvedic treatments? I was in Baroda for a treatment several years ago....my only problem was that I couldn't stay for an extended period of time. It did seem to work. I would think that being in India you would have all kinds of access to all natural treatments. Maybe you should look into it.
Also I think you need to talk to people and let them know what you are going through and making them more aware of what alopecia is. Once you get to the point of accepting yourself as you are -- other peoples' insercurities will mean nothing to you and you will be happier!
I wish you all the best on this journey of life!
Mukti
Permalink Reply by Blessed Soul on March 3, 2009 at 8:33am
Hi Mukti,
I tried ayurvedic treatment from a very famous & world renowed ayurvedic Dr. Wen i was having AA, he treated me completely. But, after 5 months i again started losing hair. Then his meds didnt work at all.
Can u plz giv me the name of the Ayurvedic Dr. or name of treatment in Baroda???? I would like to try it.
Yeah i m trying to connect with all the members here goin throu the same. I feel encouraged so c how members here hav learnt to accept as they r & r happy no matter wat! :)
I hav heard that alopecia starts with the stomach, those who hav severe acidity, gastric problem, etc....So, the first step is to keep ur stomach healthy.
Permalink Reply by Tnabugg on March 2, 2009 at 10:24pm
I have no hair on my body at all. And I too am fed up with wearing wigs and I had to have my eyebrows tattooed and I hate it.. I have been looking for answers and I have not found anyone who can give me answers. It pisses me off! Doctors don't know and pass you onto so called specialists who don't seem to have answers either.

We can control cancer now but no one knows a single thing about this and we have more than enough people out there going through this that you would figure there could be sometihng done to help or prevent?? Come on!
Permalink Reply by Blessed Soul on March 3, 2009 at 8:37am
Yeah, i m also stil hoping that somewhere in my heart that, one day Dr.s wil come up with a permanent treatment soon! :(
Permalink Reply by Paige on March 2, 2009 at 10:31pm
Priya,

I am a mom of a 12 year old daughter with AU. I have been down the path you are walking. Hoping desperately that you have somehow missed a cure or treatment somewhere. Feeling like you are chasing your tail and spending sooo much money on bogus cures and treatments. It is time to reach a point in your life of acceptance. It's not good for your mental well-being to keep going down this path. Start the healing process. There are 5 stages you will likely go through and it sounds like you have been through many of those stages already. There is denial, anger, bargaining, depression, and finally acceptance. Give yourself permission to feel each of these stages and know that is normal and is necessary for you to be happy with who you are.
Permalink Reply by Blessed Soul on March 3, 2009 at 8:39am
yes u r rite! I came here for the purpose of getting some healing by sharing my problem, my feeling, etc, with members here. Since, out here, around me, my work or my neighbourhood so far, i didnt find anyone having this prob. yet.
Permalink Reply by Carl on March 3, 2009 at 8:25am
I'm always here to offer any support too :)
Permalink Reply by Blessed Soul on March 3, 2009 at 8:40am
tks! Carl. :)
Permalink Reply by Cindy on March 5, 2009 at 4:34pm
Hi Priya,

I read your post and many of the responses. I am a mom to a 7 yr old daughter with AU. She is alot braver then me and I know I could not handle it well at all. I went on and still on a cure path for her. In your heart I think you know the doctor did not cause your AA. You AA is your body rejecting its own hair. I think once you come to terms with your alopecia and show your acceptance if will reflect on you and people will look beyond your lack of hair.

Now, my daughter is doing a treatment called squaric acid, SADBE and it is working for her. She went from being bald to having a layer of hair on about 70% of her scalp. She is getting more and more each month. Still, no return of the lashes and brows. She is treated by a doctor that is skilled with this treatment. If you want to know more about it google SADBE or feel free to email me. If you have sensitive skin I don't recommend it and it has some side effects that can be uncomfortable, but my daughter tolerates it and does not want to stop. Good luck with your road to acceptance! Cindy
Permalink Reply by Blessed Soul on March 6, 2009 at 8:55am
Hi,
Tks for ur reply. I would like to know about this treament. I will google it too. I would like to know wat kind of side effects ur daughter is goin throu????
Permalink Reply by BaldGirlsDoLunch.org on March 6, 2009 at 8:54pm
What percentage of patients did the doctor warn you will lose the hair growth after squaric acid is stopped?
Permalink Reply by Dielle on April 7, 2009 at 12:16am
I totally get what you are going through because I too was convinced for awhile that an endocrinologist I had been going to at 12 had caused all of my hair to fall out by giving me too much thyroid medication. While it may have triggered it (I had a case of complete hair loss on my head at 4), I was already at risk for it happening again. At 13 I knew that I didn't want any of the treatments available for a couple of reasons. 1) I am really freaked out by needles 2) the doctors said that after treatment is stopped the hair generally falls out again 3) some of the side-effects just DID NOT seem worth it and 4) I didn't want to make the whole situation suck more by putting myself through treatments that would ultimately prove to be futile. I am now 18 and have no hair on my head or eyebrows and have not had any regrowth at all. I have also felt fed up with the whole thing, and each time I get a new wig my family knows to just let me be for a week or so because they know that I am in no mood to be talked to. In the last six months, I have really grown as a person. I have never really cared what other people think of me and I wasn't upset about having no hair because of what people would say but more because I found it was really unfair. When I am in one of my stormy moods, I really start to resent the people that have hair, and I really sometimes just hate the people that complain about their hair. But it is important I think to remember that you only get one life to live and that we all have something that seems unfair. What is the point of letting others make you feel inferior and make you live less of a life? Yes you may get turned down by some because of the lack of hair, but eventually you are going to find the school that is right for you. The only person that gets hurt by a negative outlook on life is you, but if you start thinking more positive then you could make the world better for yourself and others. Eventually you will accept the way you are, and thrive off of it. You just have to be really confident in who you are and eventually that will be all that people will see. I am not saying you won't have bad days where you just want to curl up in a ball and cry your eyes out (we all still have those days), but at least you will be able to have some good days in between. I saw the leading dermatologist in the world that specializes in alopecia last january, and the only treatments available still only work for as long as you do them and they have some possibly nasty side-effects. In order for this disorder to happen it has to be somewhere in your DNA, it isn't all genetic, but it is partially and just needed something to trigger it. Doctors don't really understand this disorder, and it will probably be awhile before they do, but till then just enjoy life as much as you possibly can because it seems like such a waste to let your days be disturbed by something that you can't at the moment change. If you are fed up with wigs and eyebrows then just don't bother with them. Ya people might stare, but so what? do what makes you feel happy. I have never let this disorder get in the way of me living my life and I don't think you should either. When I wanted to play soccer I wore a bandana, when I wanted to go horseback riding I went. What do you want to do?

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