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 sks on
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You're not alone, Danielle. There are plenty of supportive people here. Good luck with your treatment :)
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Permalink Reply by Solange on
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Hi Danielle,
I remember that feeling and it does take time but it will pass. I was diagnosed with AU 15 years ago. We are now lucky enough to have this site to support each other. 15 years ago I was basically on my own and very scared. But please know that you are not alone and there are so many different forms of treatment and covers and stuff that, even if your hair doesn't grow back, hair pieces are available that will blend so well with your remaining hair that no one will know! Personally, I haven't gone the wig route and I also missed out on the injections, but I believe that you can wear a hair piece while having the injections..
Can anyone give more information on this?
How old are you Danielle? Are you in a supportive environment?
Solange
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Permalink Reply by grandma concerns on
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Hi hon
My granddaughter is 10 yrs old and was diagnosed 2 yrs ago, she was a very scared little girl. She has gone the treatment you are going through, and definately you can wear wigs, in fact they have beautiful ones out there. The internet has good ones and not much money if you live in the states. Canada hasn't gone much for resources tough. We have found out from wasted money that your better to get a good one and spend a little more money if you have it, there is also "alopecia financial help: for wigs in some places. But get the open weave ones they let your head breathe and you don't get hot. That was the one thing that your medicine will bring on. The injections make your head very hot and with a wig its terrible, so if its an open weave its alot better.She loves all the wigs choices and giving all the kids at school a guess at what her hair is going to be like from one week to the next. She laughs and says she has alot more options than alot of the girls. The one thing that bothers her the most is that she doesn't have eyelashes on top of everything else. This medication that she is on now won't let her put anything on her at all that is makeup.
She has accepted it well but is also praying everyday for a cure! We're praying the same for everyone on here! For sure you found the right site everyone on here is awesome! Take one day at a time, and remember your beauty is within!
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Permalink Reply by RJ Martinez on
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Th thing that you need to remember is that now a part of ELITE group of individuals who are the COOLEST- ive LIVED with Aleopecia Universalis since the age of 9 YEP through the years of the 80s HAIR 80s of course I was into PUNK rock and am still getting over the NAMES (JOKING) but shave it- and ROCK it with pride- LIVING in JAPAN always on on FACEBOOK if you need ANYTHING!
PS- GIVE up on the DOCTORS sooner you can do that the sooner you get back to LOVING LIFE....
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Permalink Reply by Lori on
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Everything you are saying is so true I lived in Japan for 7 years loved it. And loving life and acceptance is key once you get past that everything is easy, thanks for your inspiring words.
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Permalink Reply by monica on
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I agree with you one hundred percent on the doctors Richard...the doctors I feel and know used me as an experiment when I was a kid and left scars on my scalp to show it...in any case..I'm all over that now...and my choice is to accept who I am..live life as you say...and forget all the rest..as for Danielle, it's going to take some time to do all this, and know that it just matters to be happy and not give in to what people think..
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Permalink Reply by Lauren W on
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I did the cortisone shots when my alopecia started 5.5 years ago and when I did them, the shot would help in that spot but then I would just get a new spot somewhere else. I eventually decided that the emotional pain of sitting in that chair letting someone jam needles into my scalp wasn't worth it and stopped, and life got considerably better for me after that.
I also had to draw parts of eyebrows for a while. If you do get there, they have this awesome makeup sealer stuff that is super helpful in making the eyebrow stay where you draw it (I used one called she-lac because I was sixteen at the time and my mother bought it for me).
Best of luck with whatever treatment (or lack thereof) that you decide to pursue! I know it may not seem like it now, but regardless of whether your alopecia stays or goes everything really will be okay and there are lots of people to help you feel better.
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Permalink Reply by Lisamarie on
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You're lucky. I had to pay $110 every time I got my shots every 6 weeks and then my dermatologist moved to the public hospital and haven't seen him in over a year because he's the only one in my town and apparently I'm just not high enough on the importance list. Even though my entire fringe area is gone right back to the crown and my left side is about 80% bald as well as smaller spots on the right side and bottom. I'd say I have maybe 65-70% of my hair missing but they're not interested. The shots aren't that bad. Just focus on something else. Text or something while they do it. It's more like a pin prick. I used to get about 30 shots done on my head each time.
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Hi Danielle - I had something very similar to you. The important thing is not to worry or stress and to be sure you are taking all the positive action you can. Take shelled hemp daily from a health food shop, use simple shampoo and conditioner and make sure your diet assists in promoting a healthy scalp. Also I found nizoral shampoo helped clear my scalp to make way for new hairs. You will see growth soon enough.
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Permalink Reply by bree on
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hi there
swti-i wane tell u that i know its not easy being diagnosed with alopecia areata-but from my point of view,we just have to accept it,u know if u gona worry about ur aa its gona get worse,im 27 and thort i dont have a life anymore-but u know,i luk in the mirror and still smile cos theres reason y we have this,and i know that sickness is from the devil-so ya-heal urself,tell the devil to let go,by jesus strippes we got healled.i have alopecia and vitiligo-im happy with the difference i have compare to others-we al pray that one day a cure would b found-i also go for the injections into my scalp every 4th week and i also use the steriod cream.guess we just have to b patient-much love........bree
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Permalink Reply by Frank DrillZZZ on
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Danielle,
Take things day by day and try not to stress. This experience will be a test of character which will involve both yourself and the people around you. I was diagnosed in high school and it was devastating but I wish I was as comfortable back then as I am now with Alopecia Totalis. It has been an interesting 12 years now and I would not be where I am today if it wasn’t for Alopecia. I took all the energy I had (denial, anger, confusion, frustration) and put it towards education. I grew up in a bad neighborhood with absolutely no money and now I’m in school getting a doctorate. I initially took my Alopecia as a weakness and was discouraged by it but I made Alopecia work for me. I thrive to be strong and not to let Alopecia dictate who I am. You will eventually develop a special aura when having this attitude, trust me.
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Permalink Reply by somegirl on
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Danielle,
I have received the injections in my right eyebrow multiple times. It was about 3 yrs ago, so maybe they changed the rules? but i would check with another specialist. I also recently lost 1/3 of all the hair on my head and had to shave the rest. As painful as the injections are I feel they are worth it. My eyebrow did grow back and previously the small bald spots i had grew back and are some of the only patches of hair i have this time around! I actually look forward to the injections! They are painful, but they make me feel like i have some sort of control and that i am being proactive about treatment.
I am very new to this as well, when my eyebrow fell out the dr didn't tell me what it was and i never thought about it again until 10 months ago when the hair on my head began falling out. I am so sorry for everyone that is going through this. it is not easy and may never be.
i also do tazorac ointment and cortisol solution on my scalp which results in chemical burns and ingrown hair. AA is the worst. I'd love to chat more with you about it. No one seems to understand the emotional trauma of it.xo
Sarah
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