Alopecia World
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Just diagnosed....feeling very scared
Hi everyone,
I was officially diagnosed with AA on Tuesday, June 19th after noticing a large bald spot on the left hand side of my scalp. My AA seems to only be affecting the left side of my body...my left eyebrow is half gone.
The dermatologist gave me some cortisone injections into my scalp, which was probably one of the worst experiences of my life. I have to have these injections done every 4 weeks, as well as apply a cortisone cream to my eyebrow (because they can't do injections in that area) and use another type of ointment all over my scalp in hopes of thickening it all over.
Of course she has told me that the injections work 80% of the time, and that my eyebrow MAY grow back in a few months or a year but that ultimately the only predictable thing about Alopecia is that it is totally UNPREDICTABLE.....great...
Anyways, I found this site and so I'm hoping that maybe by talking to others, I may not feel so helpless in all of this. I am incredibly scared of losing all my hair and very self conscious about my eyebrow...I am praying that the cortisone will work or that I go into "remission" and it never reoccurs. I try not to think about it too much, but it's very difficult.
Thanks for reading.
-Danielle
Replies to This Discussion
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Permalink Reply by scubawa40 on
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Hi Danielle
I understand what you are going through - The injections worked for me well enough to promote re-growth and keep the hair loss at bay. My Doctor mixes a numbing agent in with the steroid solution and that helps take the edge/sting off a bit. As for your eyebrows, I saw a person that specializes in permanant cosmetics and I had them "tatooed" on. The techigue used worked pretty well and my eyebrows don't look "painted on". I am glad I went that route.
Take care of yourself too. Don't hesitate to talk to a professional about how you feel emotionally.
Pam
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Permalink Reply by Danielle on
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Thanks Pam, I have been in contact with a tattoo artist if the cortisone cream doesn't work
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Permalink Reply by Denise on
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Hi Danielle. AA became an unwelcomed visitor in my life 5 years ago, in my mid 40's....I remember how scared I was then, and even now each time a new spot appears. I could not stop crying. I also take the shots in my scalp. I admire those on this site who are able to stare this in the face and just say NO! :D I cannot seem to do that. I will fight it every step of the way. Now, at age 50, there are just not many things I still like about myself. My hair was always thick and would do anything I wanted it to do. Now, I just pray to wake up every morning with a full head of hair. I am grateful for a Savior who keeps count for me!! He also pulls me through the rough "patches"... I do love this site, although I am not much of a "sharer" myself. I don't usually comment, or participate in discussion, but your post brought back all of those emotions. You will be okay. Just hang in there, and remember that whatever decisions you make, they will have to be right for YOU, as we are all different. Live, Laugh, Love
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Live. Laugh. Love.
That's a special saying between my mom and I...Oh do I try to do all of those 3 things, it's just a bit more difficult at this time..
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Permalink Reply by Adrian Coe on
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Hi Daniele,
Hope you can bare up..i know its difficult iv been there and have beenliving with this for 25 years on and off! thing do get better and it will grow back..regardibg the injections i know they hurt but trust me they do improve things quite quickly and can make small patches grow back all together so fingers crossed....they can inject into your eyebrow i have had it done with a very fine needle...and they gre back within 3 weeks....! so speak to your dermo about that if cream doesnt work.....takecare and stay safe xxx
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Thanks Adrian! It's nice to know that this may all be worth it...that's what's so frustrating about all this...there is no definitive answer! Every case is different and every outcome is different
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HI Shauna,
Thanks for the message! It's great to see how strong you are at such a young age. I'd definitely love to chat at anytime :)
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hey i know how you feel just to let you know and im just gonna be honest with you ok the steroid cream can work but in most cases wont also the side affects of using steroid creams and shots is that you can lose your hair once you stop taking it and get bad acne type on your face or where ever you have used the cream with long term use i recently got of using the steroid cream ( elecon) and have been using a product called hair up google it so far it is working for me i have a 1 bald patch on the back of my head thats all for now and i have a 4 big bald spots on my face so far the product is working on my head but i dont know about my face in the beard area just have to hope i guess the main thing i can tell you is this i know wat you are going through and it is hard but you just gotta not stress about it start also taking multi vitamin tablet as well and get enough sleep also these things can help i will keep you up dated on if i find anything else that will help ya laters from karlo
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Permalink Reply by Gale Moorman on
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Hi Danielle, You have a great support group here. I've had AA and it went to Alopecia Totalis, but it hasn't stopped me from doing everything I wanted to do. I wear a scarf and/or baseball cap. I'm not into wigs; I'm athletic and used to play tennis about 5 hrs a day, run track and all in my collee days but now have 3 grown sons; was laid off and started my own cleaning service and because of the tennis was involved in a tennis league yrs. ago. Played that and became involved with the US Open Tennis at flushing and have been working there over 10 yrs. I never got to the point of scalp injections and just decided to live with it; it's not painful, no need for hospitalizations, no blood lost, Im living with it. Had alopecia Totalis for decades. Looking to start another home based biz; went to England where my friend I met online started me thinking about a cleaning service. Come here often for support which I did. Where do you live? Get back to me whenever you feel the need.
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Permalink Reply by Chris on
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Danielle,
I embarked on the same emotional roller coaster back in 1997 when I was diagnosed with AA. I went through the same treatments as well with injections into my eyebrow as that was the first to go.
I commend you for reaching out early on in your diagnoses! I wish I would have had the courage back then to do the same.
I wish I could say that it gets easier to deal with but I still find that I am not comfortable with it. Stay strong and I hope you realize that the essence of you is not defined by your hair or outward appearance.
Take Care,
Chris
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Permalink Reply by José Almeida on
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Dont't feel scared xD haha cortisone... humm.. already heeard that that thing screws up your heart and its just temporary so i never used it, and if it doesn't work... just be yourself, and dont care about others... xDD im kinda like u, and im awesome :3
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Permalink Reply by Cinder B. Rand on
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Dear Danielle, I am so sorry that you are going through this. This is the worst part. This last May was 5 years for me. It does get better. Please let me share this with you and I hope that this helps. I have met some of the most amazing people through this journey. Mostly woman and woman of all ages. Seems like I have met more woman than men. I have learned so much about myself and also have learned how to get through this. I learn something new almost every day. This group is wonderful and very helpful. I hope the shots and the creams will work for you. Let us know how you are doing and remember we are way more then our hair. Hugs to you. Cinder Rand. You are not alone, not by a long shot!!!!!!!
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