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 Susan Beausang on
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HI Danielle
I still remember when I first heard those words with similar prognosis. I was devastated and felt very alone. I did not know anyone with this disease and my doctor did not offer and support groups. I was on my own. Reaching out to others who have experienced what you are now seeing is very helpful. I've had AU for 11 years. In that time, I've had two re-growths (experiencing one now) but even though I currently have hair, I anticipate the next fall out - it's just a normal reaction. I wish you the best of luck and don't forget to talk to as many people as you can that have experienced Alopecia. It's a crazy emotional disease. Good luck.Susan
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Permalink Reply by Allen Smith on
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Hey, I know the feeling when it first comes on. Pray to god and ask him to heal you and believe in the prayer. I will pray for you as well. You will be amazed at what the power of prayer can do. We love you
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Permalink Reply by Stephanie on
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Danielle, Looks like you have already gotten great advise. Happy to share some of the things I have learned with you any time. Hang in there! :) Stephanie
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As for the practical side of alopecia--wigs, etc., here's one more piece of practical info before I get to the emotional stuff. Eyebrow can always be tatooed (check out Permanent-line.com, for example.) Even if it grows back, it will be in the same place as original brow so shouldn't be an issue. How you treat the problem (alopecia) is the most important thing. It is scary and not enviable to be losing your hair and having no idea of when/if it will stop. Try not to (re)define yourself because of this new development and new aspect of your life. Bring your friends in on it who you think can be supportive or find others who can deal and help you deal with it--including the insecurity and precariousness of the situation.
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Permalink Reply by Molly on
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Hi Danielle,
you're not alone!!! there is tremendous support on this site. I've had AA for going on 10 months. I'm still doing the injections every 4 weeks and they don't bother me...a couple areas are tender but for the most part, i don't find them painful. I also use the steroid shampoo, cortisone gel and Rogaine. I think I've lost about a third of the hair on the back and sides of my head, I spent Nov - Jan wearing a hat! Those original patches are growing in, but I get new spots in the back and the sides are so thin. I can pull my hair back in a bun, hairspray into place, and no one can really tell at this point, but there's no way to know what's going to happen. I've gone gluten, sugar and dairy free, take a handful of vitamins everyday, especially hair, skin and immune system support. I even tried acupuncture, but that didn't help (although my back feels much better). Hopefully, the patches you have now will grow in, in time and you will learn to deal with this. I find the hardest part is combing my hair and cleaning up all that falls out and clearing the drain in the shower. Totally depressing, but you'll get used to it! I suggest exercise to get your blood and sweat flowing, it eases the mind and makes you feel much better physically. Keep us posted, you have friends here that understand!!! ;-)
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Danielle - know the feeling for sure. I started out with AA 10+ years ago that has since degenerated into AU.
Do know however that if it's just AA - there is a good chance that you can recover so there is no harm in being "CAUTIOUSLY" optimistic but do know the facts and stats.
The one piece of advice I'd give you is to opt for a cosmetic solution sooner rather than later. I walked around with half an eyebrow for over a year and it was discomforting till one day I realized that I can just pencil in part of the missing eyebrow. With the right type of eyebrow pencil/shade it doesn't look that bad!
You can always wipe it off at night before going to bed when you need to apply the cortisone and reapply in the morning.
It's not a solution to the problem but I think it makes life a little easier in the interim.
Finally I'd recommend you go see a few additional doctors because I have had eyebrow injections done for years. They use a much thinner needle and a more diluted mix of the cortisone solution but I've definitely heard of it being done.
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Hi Danielle,
Welcome to this support group site. It always helps to talk with someone that is going through the same thing. Take one step at a time. It's good that your doctor is trying to do something right away.
I wasn't diagnosed properly so I lost my chance of regaining my hair. Just stay positive because putting added stress on yourself does not help the situation. I am older and have dealt with hair loss a long time. I always get my hair done every week; but I have lost so much that I am trying to make the transition to a wig. I do know that it all takes time. The emotional adjustments can be difficult. People just say, "just put the wig on and forget about it." It sounds easy for someone who isn't experiencing the emotional side of what is happening to you. Just hang in there and visit our site often. Try to focus on the fact that no matter how we appear on the outside beauty is from within; any physical change to our body does not change who we are inside. Love yourself for who you are. I have to remind myself that I should be thankful for for the choice of wigs and the variety they have today. Some women are very comfortable just not wearing hairpieces but again, those adjustments take time. I'm sure you are a beautiful person inside and out so don't lose confidence in yourself. Please write any time and I hope things go well for you. God bless. Georgia
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We all know how you feel and we are here to help. They can give shots into the eyebrows but you need to be with a Dr. that knows what they are doing because it can cause problems. I would recommend waiting and seeing if the shots work on your head. There is a really good chance that they will. Either way you will be ok. The uncertainty is the hardest part.
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You are not alone! This site is full of information and supportive people. I was diagnosed with alopecia areata in January. At the time I was really scared. It progressed like a storm around my head. I lost myself for a while, watching my hair desert me. I realized that the most destructive part of this disease is that it threatens to swallow up everything else you care about. Obsessing over this- it can take over your life, if you let it. Then the disease wins. Someone told me to shave my head and I thought they were nuts. Finally, when I had lost more than half of my hair, (and my wig came in), I shaved it off. It was the best thing I ever did. I took control. I cleaned up the mess and what was left was me. My worst case scenario was staring back at me in the mirror-and there I was- still worthy and good and loveable. It was ok. Look at the pictures on this website. Bald is beautiful. It makes your eyes more luminous.
I took this diagnosis as a wake up call and got in touch with a diet and supplement expert. Nothing like losing my hair to motivate me to change my bad habits :-). He changed my diet, got me on a ton of supplements (some of which are really great for reducing stress and anxiety). I look 10 years younger than I did in January. I am saying all this because this diagnosis doesn't have to be a bad thing. It was the kick in the pants that I needed to start taking care of myself. I feel stronger and happier than I was before I got the diagnosis. My hair is slowly coming back, but I am trying not to get too attached to it.
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Permalink Reply by Ashle on
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Hi-
Could you share with me what supplements you take for stress and anxiety?Thanks!
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Permalink Reply by NettyNurse on
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Hi Danielle,
You've taken a great big step by reaching out for support, our condition is not an easy one to cope with. I've had Alopecia Totalis since I was 4 years old, and I'm 26 now. It took me 22 years to reach out for help. It has been a journey, but it has given me a new perspective on life in regards to how I view myself and how strong I really am. Just pray for strength and patience. Be strong and remember everything happens for a reason. Message me if I can help you with anything! I will pray for you! <3.
Sincerely,
Shenette
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