Alopecia World
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Recently diagnosed and very depressed
I am a 38 year old female, who, up until this point, used to have a glorious thick head of long dark brown hair that flowed past my knees. It was my very best feature. I havent cut it since i was 15 years old.2 years ago, I noticed when i brushed it that there was a LOT of hair that would come out in my hair brush, but i didn't notice any patchy places at that time. Then about 18 months ago, every time i washed it, my scalp would react with huge hot swollen lesions that were painful and bloody. The doctors would treat this secondary infection with antibiotics and as the lesions went away, my hair would fall out in patches where the scabs fell off. I begged the doctors to biopsy these infected lesions but it took me 18 months to find a doctor who would listen. Last week, I was finally referred to a dermatologist. He listened to me carefully and took several biopsies, and he rushed the results, which i was SOOOO grateful for. The diagnosis was Alopecia Ariata. I was, and still am completely and utterly devastated. I had only 2 worst nightmare scenarios that i prayed all my life would never happen. 1 i prayed to have healthy children, but instead I have delivered 4 full term stillborn children, so i have lived my worst nightmare 4 times now. I only found out this year that they died due to a genetic blood disorder that I have that the doctors were not aware of and didn't test for even though my kids died repeatedly. The second worst nightmare i prayed i would never go through was losing my beautiful hair. And now, I know i am living that nightmare as well. At first, the patchy places were regrowing the hair on their own. But now, I have 2 spots that the hair is not regrowing at all. I have considered ending my life rather than watch my hair fall out one patch at a time. But, while i was considering this, my cousin suggested i do some research and see if there are any other treatments that might prevent the hair from falling out to begin with. I have been on the computer for the last week, ever since the diagnosis reading everything i can about this God awful disease. I feel alone and scared and so depressed. I found that there have been some experimental treatments using immunosuppressants. The treatments are risky, and they have bad side effects and risk of death is a very real possibility. But I spoke with the dermatologist about it. I have signed a release. And had many viles of blood drawn. If the blood tests come back within normal limits, then i begin immunosuppressants next month. I am not making this post for advice really. I think i am making it more because i have nobody to talk to about this. And I just need to let it out. even if nobody responds, i think i will feel better just to have written it and gotten it out. kind of like getting it off my chest so to speak.I do welcome responses though. I would also like to meet other people with alopecia. I don't know anyone with it and i don't care how old you are or if you are male or female. I just want a friend that can relate and wont tell me things like "its just hair" or "you are overreacting" or "its not the end of the world" because to me, it IS the end of the world. I have lived through enough bad stuff and i am so tired. Tired of it ALL. So i guess this is me reaching out for a friend. Anyway, Thank you for listening. I wish everyone the best on this Monday morning. Raven.
Replies to This Discussion
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Permalink Reply by Tom on
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Hello shy Raven
Welcome to the site. I'm a late comer myself. I've had AU for over 40 years. I just came across the site a few months ago.
I am not a doctor so I won't pretend to know things that I don't. Your treatment plan is your personal business.
However it's obvious from the other experiences in your life that your a fighter. Don't stop fighting now. I'm a fighter also and there have been many times in my life that I wanted to just lie down and give up but I didn't. Because once in a while right in the middle of a fight something beautiful happens. A person I would never have known or experience I would have never had if I'd just given up.
I know exactly where you are now and how you feel. I won't lie to you it isn't easy. But please don't give up. Your worth so much and have so much to offer others. Please stay in touch and let us all Know how your doing.
Bye for now
Tom
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Permalink Reply by Tryingtodeal on
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I can understand how you feel. I too have gone through many of the same experiences. I also lost a child and I have been dealing with the pain of fibromyalgia and thyroid problems. So a lot is attributed to auto immune disorders. I recently was diagnosed with Alopecia. My bald area is currently 3.5 inches wide. I am doing the topical treatment in hopes that it works and then begin the injections to hopefully start the regrowth. I am a teacher and my job is very stressful and I was told to reduce my stress to help with the hair loss. But the diagnosis was stressful in itself. I became very depressed and didnt want to even leave my apartment. I mean how can I control something that is so vague in treatment and results? I found this site and it helps my to ralk to others going through the same thing. I knkw how it feels to continue to be strong and try so hard all of the time and just have no energy left. It almost feels as though we are being punished for something we have no idea of what we did. We are in this together and we can be eachothers outlet.
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Permalink Reply by Tony on
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I am not going to pretend that I have any answers for you. I will just say that I have been through many adversities myself. I would go from feelings of anger to depression to questioning myself, family, God, etc. and what I learned through all the adversity is it can make you stronger, it can lead to closer relationships with those you love and it can lead to understanding more about yourself. Each morning I wake up and say " Thank you God for making me the best person I can be" . I would encourage you to seek out professional help or support groups. You may think you have to go it alone but it doesn't have to be that way. You will be surprised that that there are people who will be with you, guide you and help you as you need it. Some of my closest friends I came upon at the darkest times of my life. We are rooting for you!
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Permalink Reply by Shy Raven on
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Thank you to everyone who has responded so far. I've been looking at options and trying to find support groups. Wigs, I cannot afford, but an old friend from middleschool is a hairstylist (I had no idea) and we are looking into making tracks with my own hair. My cousin (may karma smile on him) also reached out and has offered (when the time comes) to shave my head and give me a lovely tattoo covering the baldness since he owns tattoo shops and we are both ink enthusiasts. I've also started collecting scarves and veils to add to my collection of clothes. I'm trying to get referrals to a psych to deal with the depression. And I'm just waiting on the blood work to begin immunosuppressive Therapy. I agree with y'all, there are good days and bad days. But your responses have helped lift my spirits. I think most days I'm not in such a bad place anymore, although I know that will probably change when the next patch falls out. One day at a time is how I'm taking it now. Thank you everyone for your kind words and support. Raven.
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Permalink Reply by Dr. Hina on
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Hello Raven , I can pretty much understand the pain of losing a child as I myself have gone through it once and still can't overcome. Few things are not in our hands ......
I definitely have good news regarding your Alopecia areata Raven . I treat all types of Alopecias . It's a Naturopathic approach. I would really like to help you. I have attached pictures of a patient after 6mths treatment. Alopecia areata is a treatable problem . - Attachments:
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IMG-20160625-WA0002.jpg, 85 KB -
IMG-20160625-WA0003_1471025646470.jpg, 94 KB
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