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 Ktownnana on
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Hi Danielle, I think you will find this website to be so helpful to you--it sure has been to me. I find that I am not in this alone and things could be much worse. I could have lost my hair due to chemo or radiation so I am blessed. As Stephanie suggested, give it to God--there isn't a problem too big that He cannot solve. We are all in this together and I am sure you will find the love and support from this website to be a huge encouragement for you. I pray that you will find comfort and peace.
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Permalink Reply by CG on
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Dear Danielle , It's a known fact the older you are when you are affected by AA , can work in your favour. Often at your age AA can often turn out to be a one off visitation , and will clear up in usually about 9 months , and with luck never bother you again. The injections should do the trick and halt it's progress allowing the hair to re-grow , at first you will notice very fine white hair which as it grows back, will eventualy return to its normal colour again ,let's hope that it does.
As you know AA is a very unpredictable complaint , so most of the time it's a case of keeping your fingers crossed and hope for the best ,as even the experts cannot make you promises , but having said that the the odds are in your favour , providing you look after yourself, with good food and multi vitimins , which can help.
As for the patch , just colour it in with a safe colour match product , and pencil in your eye brow , it will give you more confidence about yourself , because
only you will know that it's there.Best of luck to you my love , Chris Grant.
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Permalink Reply by Danielle on
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Thanks Chris, I just found another small "patch" starting on my left temple/ear area...every new discovery is like a kick to the stomach..it sucks
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Permalink Reply by Debwp on
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OK Now I'm not a doctor but I do suffer from AA and I have recovered: in a nutshell the answer is DON'T WORRY, AS IT IS WORRY THAT CAUSES AA.
So, taking that a bit further, how do you stop worrying???? By freeing your mind of it, the terrified thoughts relative to how I look, YOU ARE MORE, MUCH MORE THAN HOW YOU LOOK, you are unique & there is only one person on this earth as BEAUTIFUL AS YOU, DANIELLE, so take it from a woman of 56 who has walked in your shoes, YOU ARE BEAUTIFUL JUST AS YOU ARE, WITH HAIR OR NO HAIR, so stop worrying........and when you do, your hair will grow back, it's as simple as that. Just try to love everything about yourself, so when you walk past yourself (in a shop window) say to yourself "isn't she so beautiful, yes, me......." and be kind to yourself, protect yourself, do good things for yourself, & say lovely things to yourself, and guess what? YOU WILL FORGET ABOUT THAT LITTLE PATCH (OR TWO) AND IT WILL DISAPPEAR.............try it now & have fun, laugh & enjoy your life, afterall, it's not breat cancer or leukaemia, ok???? love to you from Deb
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It's hard to read these posts, which is why I only do so every few days...tears just build up in my eyes...tears of love, tears of fear...thank you for your support
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Permalink Reply by C on
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I seem to have the 'left side' thing going on as well. It's not easy being me with less hair but as you said Alopecia is very unpredictable just as any other condition that seems to be related to the immune system. I used to get cortisone injections in my (left) foot and thought I would pass out...I could only imagine the scalp.
My hair falls out and grows back and falls out and grows back and falls out.....Hopefully the treatments will work, and yes, try not to think about it so much. (I know it's tough).
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Yes, the treatments will work physically, but it is the emotional element that is causing your alopecia. Please read my reply to Danielle, but in a nutshell, please STOP WORRYING, YOU ARE SO MUCH MORE THAN YOUR HAIR. However, your immune system is impaired due to the high stress factor, you really must get rid of the stress in your life. Stress impairs the immune system, so that your immune system is weak due to the high stress, so try relaxing, laughing and enjoying life a lot more, your hair will grow back, believe it & it will. Your body is clearly telling you something, and it's telling you to slow down on the worry factor, ok? So do it now, laugh, think happy thoughts, when you brush your teeth say "hi beautiful" to the mirror, book in a massage, whatever makes you happy, do it & do it & do it........your hair will take a back seat & stop checking out the bald spots, they will heal as you heal yourself, from the inside out, until you reach that beautiful place when you truly love yourself, just as your are...... ok love you too, from Deb
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Permalink Reply by Helena Wenzin on
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Hi, Deb, I am sorry, but I am getting a little offended by what you write. I had AA all my life, and a few years ago all my hair fell off. I was in a great place in life, couldn´t have been happier. And according to you - the reason that my hair hasn´t grown back by now - is that I can´t relax enough... Jeee, show me that study please!
I AM NOT TO BLAME FOR NOT HAVING HAIR ANYMORE!
And I go bald, so no crap about me accepting and thinking I am beautiful - I know I am.
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Permalink Reply by Tallgirl on
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They now think alopecia is connected to gene markers that also appear for diabetes, rheumatoid arthritis and other conditions (See Research in Discussions and my blogs). So, if all this was a potential since before birth, stress would only be a trigger, not a cause. Environment, foods, hormones, medicines or immunizations, animal fur, water source, or pesticides may even be individual triggers for different people. They do not know yet. Some work is being done on proteins, but mostly for male pattern baldness. Let's wait before passing judgments!
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Hi Helena,
Sorry to hear that you are offended by what I wrote, as I meant no offence but offered support to Danielle & others newly diagnosed, who probably fall into the majority of sufferers who will regrow their hair after treatment. This is not just my opinion, this is backed by existing medical research on the condition:
"Prognosis: In most cases which begin with a small number of patches of hair loss, hair grows back after a few months to a year. In cases with a greater number of patches, hair can either grow back or progress to alopecia totalis or, in rare cases, universalis." (Ref: Wikipedia: Alopecia Areata) It is also widely believed that stress is a causative factor in the development of AA, along with strong links to family history etc etc. Latest research by Colombia University identified eight genes that underpin AA, which is a huge breakthrough and will see the development of new treatment for sufferers, offering fresh hope to all sufferers, especially those who suffer from AT or AU.
Yours in health & happiness
Deb
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Permalink Reply by Kathryn Parker on
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Hello Danielle
I was in my mid 20s and a single mum when I first had AA. It started with a little patch the size of quarter/10p piece just at the front of my hair and I was completely freaked out. That episode escalated to me loosing most of the hair on one side of my head for a few years. I too had the injections on various occasions - pan jetting they called it then. It worked to differing degrees but the AA never went away. For a couple of years in my mid 30s it seemed to get better but then I went through another few years when it would almost get better but then start dropping again. I am now about to turn 50 and I am happy to say that at the moment I have a lovely head of hair but I am never complacent - it can recur at any time and I know that.I cannot offer any comfort I'm afraid - its a shitty disease and I have hated every moment of it. I wish I could be strong like most of people on this site and embrace my baldness but I can't - I have hated it and felt like it was a personal attack on my femininity that has undermined my sense of self and left me feeling helpless and unattractive.
What I can offer is hope - sometimes it gets better. Some only ever have it once and get over it. No two sufferers are alike so its hard to tell. You may be able to embrace and learn to love your condition but if you don't then my heart goes out to you and I wish with everything that I have that for you it will be short lived and you will kick it into the shit heap of experiences and move on with the rest of your life.
Take care
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