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What causes this? It may give me closure or help me somehow
I'm new to this site, actually to any social site talking so openly about Alopecia (I am proud of myself for acknowledging and even having the courage to research on it and joining this community).
I lost my hair at once (i have just learnt this is called totalis), all of it like 10 years ago. Was just a freshman at the university and was at a total loss. I got confused, felt so lonely,cried every night to sleep, almost quit school but at some point i decided to see a doctor but nobody could tell me what was wrong. I just wish i got a straight answer then but i didnt and all they wanted to know was if i had done drugs/steroids or if i had done any weird things to cause this.
This was so depressing and at some point i contemplated taking my own life. But somehow i decided to live and it was not for me its just that i felt my family would be crashed and i love them so much. So i bought a wig and have continued to do this ever since. Only my parents and siblings know about my condition. My near family and friends are curious about it but i have no answers and they have too much to conclude on my story so i just choose not to discuss it.
So after all these years, i still don't know what causes this condition. I cant thank this community enough because for once in these many years i know it has unfortunately happened to many of us and i feel at home here . I have read here that many say its stress related but cant imagine being this much stressed at 18 years of age. I have never known anyone who has this condition and in my country i imagine am the only one as have never heard a mention of this condition.
You can help by advising on what causes this and if their are other conditions am vulnerable to so i can get prepared and may be seek medical attention. I have lived it and some days are good others are not and i have to cry myself to sleep on those days but at least they are not as many as they used to be....... will appreciate
Replies to This Discussion
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Permalink Reply by Sheryl on
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Hi I'm just new to this support group too, and was saddened to read you got so low in spirit, although I too am currently struggling to find a reason to carry on since this happened. I have alopecia totalis. My skin specialist told me stress doesn't cause it, but it doesn't help either. It is an auto-immune disease. In my case he believes it is strongly related to the fact that I have chronic eczema (another auto-immune disease)..am not sure if this will give you something to look up or research but maybe it's a start. Good luck!!
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Permalink Reply by BlitaG on
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Hey Sheryl. Thanks for the information. I will definitely seek advise from a dermatologist. Its a tough condition to live with and i know what you are going through. But we shall do our best and make the best out of it.
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Permalink Reply by RAPUNZEL on
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Hi BlitaG, I unfortunately don't have any answers for you. I am not sure there are any at this point. I have a different type of alopecia than you and mine is related to genetics. Perhaps yours has a genetic component to it as well even if others in your direct family don't have it perhaps they have a gene that was passed on to you? I really don't know. I just want to tell you I get it. I understand everything you are saying. I have had alopecia for 8 years and have never lost all my hair. I just go thru huge sheds and sometimes regrowth but then it falls out again. Right now I am in the worst place I have been fallout wise and I am trying to remain calm but it's extremily hard. I am happy to hear that you have less bad days than you used to. I hope pretty soon your happy days are much more common and the sad days are in the past. It is a grieving process. And unlike other grieving times, like when someone dies, we carry this with us everyday everywhere we go. What causes it? I don't know. Perhaps you can get some closure knowing that others are dealing with this also and are finding a way thru it. I know that has helped me but I don't think I am thru the worst of this yet unfortunately. Fortunately for you I think you are.
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Hey Rapunzel, Thank you so much for the insight. I imagine it is either genetic or i'm autoimmune and those are things i have no control over hence the great depression that this condition brings. Sorry for your situation, i can imagine going through this over and over again. Just wondering do you take any medication or what triggers the regrowth in your case. Would love to know.....
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I used Rogaine and still do. I started with 2% and worked my way up to 5%. That worked great at first but I went thru sheds and everytime that happened I upped it a bit (little 5% mixed with 2%) that seemed to helped the sheds slow down and a little regrowth. Then it just stopped working (after 6 years or so) I am using full 5% and twice as much as directed per my doctor. My doctor prescribed Finasteride (which is for AGA) and it took approx. 6 months to see it start to work and approximately a year until it was working really good. Unfortunately it stopped working shortly after the one year mark at about 15 months I was shedding quite majorly and that continues now 2 years after starting the medication. I still have hair but I wear a wig as I am not comfortable with the way my hair looks or feels to me. I have a different alopecia than you so you would have to talk to a doctor to see if Rogaine would help you out. I think Rogaine stimulates growth but I think Finasteride has more to do with hormones in your body and its a pill. Rogaine is a liquid rubbed on your scalp. :)
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