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 Erika on
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Hello there I two was very scared when they told me I had injections in my eyebrows and all over my head it didn't help I needed up losing all my hair and my eyebrows along with my eye lashes I never in a million years would have thought I would be going through this at my age. The fact I am a nurse makes it worse I have to work and wear a wig all the time cause if I don't patients will stare and wonder what is wrong with her can I get what she has I feel alone most of the time. I read so many story's on how people have learned to deal and love themselves and I want to be that way as well but a big part of who I am is feeling like a beautiful women and I don't feel that way without my hair I feel like I have to hide so I don't get the looks. I hope I can grow and learn to love me for me and find a great friend to talk to through all this madness!!
xoxo
Erika
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Permalink Reply by Terecia on
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Hello Danielle.
I know what you are feeling. I felt the same way 4 years ago when I was also diagnosed. I recently found this site and realized I was not alone. Many on here have given great advice and I wish I had found this site 4 years ago. Take things one day at a time, because it does get easier.
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Permalink Reply by ienneleigh on
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Hi Danielle, My daughter has had AA since she was two years old (small bald patches came and went) and she lost all of her hair and eye brows completely after her sixteen birthday. I cannot even begin to describe the emotional pain and anguish that AA has caused for her, and for her dad and I to see our daughter slowly died and emerged as a new person without any hair. The first year of her complete hair loss was just like experiencing a death in the family. All of us went through all the stages of grieving.
I'm sure not all AA patients and families go through this drastic change, but I'm also sure there are some who understand exactly what I have just described.
The turning point for us was to receive help from our local AA support group, as well as to attend our first NAAF (National Alopecial Areata Foundation) conference last year - naaf.org . There were about 900 people at last year's conference in L.A. (Alopecians and families). This year the conference is in Washington DC during the week of July 16. Try to go if you can. The Foundation provides financial help for those who cannot afford the cost of the conference. Don't hesitate to seek out help and support from others, IN PERSON... There is nothing like sitting across someone who knows and understands your anguish, fear, and emotions.
Just remember this: those who truly love you will always love you no matter what. Beauty comes within and once you overcome your fears, you will realize that nothing else and no one in life can ever hurt you. My daughter will be eighteen soon and for over a year, she had decided not to wear a wig or cover up.
Take the time to watch the movie, "Happy Thank You More Please." My daughter watches it for therapy.
God bless you and always remember that you're never alone!
With much love from an AA parent!
Jenny
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Permalink Reply by Craig on
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definately not alone....in the way you feel and everything you've gone through and are going through. I now have Universalis and it was a long, slow, torturing process to get to this point. Not gonna lie....Lots of sadness and feelings of helplessness. But trust me, the feelings do pass and although you may never fully have acceptance, it does get a lot easier with time. Just be strong and know that your hair has never, and never will define who you are as a person.
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Danielle, I forgot to ask you, did you have a biopsy? That is the only way for a true diagnosis. Then you know if you are wasting money on products or not. G.
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Permalink Reply by Raquel on
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Danielle
We are here for you. I am from South Africa. I was never diagnosed as the dermatologist is very expensive but i do have hair even though very thin en little..and i do have eyebrows but over the years the reactions of people towards me made scares emotionally so i have decided to shave all the thin hair off and start wearing wigs. I am in my 6th year and plans on going to the gym bald headed!! so.. do whatever you want to do to keep your hair. If all else fail always believe that you R doing your best, most wig sellers do have hairpieces..go and check it out! Good Luck xx
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Permalink Reply by Maggie on
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Danielle:
I definitely understand what you are going through. This can be an emotionally damaging disease, but you are not alone. The injections are emotionally and sometimes physically painful. For me it was both. I had a doctor that was injection happy...he would do an injection anywhere I was missing hair and I mean anywhere telling me this will fix it. Well 8 months later I went from one spot to about 75% bald and parts of my eyebrows were missing (I also got shots there), along with spots of body hair (being Greek we are pretty hairy so I looked polka dotted on my arms). By the end of 8 months I had no regrowth just dents in my bald head making it look more like a golfball than a cue ball. My injections were pretty painful I dont know if its because he did so many or what, but the last time I got them he went through 3 full syringes and about 30 injections and hadn't even got to the back of my head. Needless to say it was not for me. I went out and bought wigs and really enjoyed them. There are other options than injections so don't feel like thats the only thing if it ends up not working for you. For me, my alopecia is aggravated by eating gluten. Once I stopped eating it I got better. Now I know this isn't for everyone, but it just shows that cures for AA can be just as unpredictable as the disease itself.
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Permalink Reply by Renee on
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Why can't they do an eyebrow injection? I get those and it works. Don't worry about losing it all because that might not happen.
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Permalink Reply by Debbi Fuller on
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Hi Danielle,
This is the scariest time of all. After this, it gets better because you learn that you aren't alone and because you get to a place of acceptance eventually. Many, many people get spots in their lifetime - one out of every hundred people get a spot or more and MOST of those get their hair back even if they do NO treatment. Only a tiny percentage, around 2% proceed to total hair loss. Even if you were one of that 2%, all is not lost as there IS wonderful life after alopecia. I've had total hair loss for over 20 years and I have a great life, a wonderful husband and I would not give back my alopecia even if I could. Please try not to stress and take it one day at a time. You're doctor is right that you don't have any control over it so there's no reason to spend time being upset. You've found this site and everyone here knows what you're going through so at least you have a support system now. Feel free to lean on us.
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Permalink Reply by Pat on
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Those feelings are all perfectly natural and is what we all went through when we first noticed that 'spot'. It's a tough journey, I won't kid you on that. Lots of highs and lows, quite an emotional roller coaster and we get through as best we can. Being able to chat here and post about our fears and hopes helps tremendously. The shots seem to work for a lot of people so I hope they work for you too...like your doctor told you, alopecia is totally unpredictable and what works for one person may not work at all for another. The support you'll get on this site is awesome so I'm glad you found us at this early stage of your aa.
Wishing you the best!
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Hi Danielle. My name is Hailey and I'm sure you've heard this but I just want to say that you're not alone in this. I remember when I was diagnosed six years ago I felt like I was totally alone. But with the support of my family I got back up again :) and you will too. I hope your treatment works out :) and like these comments suggest everyone is rooting for you and here to help :)
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