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 Debwp on
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Hi Danielle,
I read your email and I understand very well how you are feeling about your recent diagnosis. My guess is that you have suffered some sort of emotional traume, been very stressed or had sever emotional traume in the last 12-18 months, is that correct? Firstly, I would like to reassure you that, while you still have the bald spot(s) it certainly is scary, however, rest assured that the cortisone injections will work and you will be amazed at how quickly the hair grows back, especially as this is your first experience with AA. Secondly, recognise within your psyche that your emotions have been unwell which has resulted in this, and you agree with yourself that you are going to eliminate anxiety, worry and fear and replace these negative emotions with positive, happy and peaceful thinking. This, above all else, will restore your emotional balance back and your hair will regrow. Believe this with all your heart, this positive thinking will assist the cortisone jump start your immune system back into health & it will stop attacking your hair follicles.There is strong evidence to suggest that AA is caused by emotional stress, so try to relax as much as you can and avoid possible stressful situations to assist your immune system to get stronger. Ways to relax include massages, meditation, laughter, happy times and most of all, do not worry about it....tell yourself the hair will grow back and when it does, you will forget all about it.
However, it can come back later as it did in my case, 30 years later, and I once again was very worried, however, once again the cortisone injections worked beautifully and all my hair has grown back in the 3 spots, but this is the last time it will ever happen again as I know what causes it & I avoid stressing out and I control anxiety which I now know contributed 100 percent to the AA.OK then best of luck, I hope the above gives you peace of mind, your hair will grow back with the cortisone and you will be back to normal in a couple of months.
Most important of all, look after yourself by not worrying or stressing, ok?
Wishing you health & happiness, Deb
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Permalink Reply by You can do it : ) on
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I have had aa for the past 14 years and have been doing the injections for about the past 10 years. One of my biggest fears just like you is to lose all my hair. I am not gonna lie and tell you that it gets easier right away. Sometimes your fine for months/days/weeks and then you start feeling down again for a short period of time. This site is amazing but find a friend or family member who you feel open with to confide in when your feeling down; they dont have this condition so they wont fully get it but it will stll help. Try journaling your feelings and listening to music, I am going to list some songs that I like listening to when I am going through a hard time. Sorry if i sound to much like a shrink, my friends tell me I tend to do that. Hang in there, glad you found this site :)
Hard to belive-David Cook, What doesnt kill you makes you stronger-Kelly Klarkson Hold On-33 miles Anyway-Martina Mcbride, Stand-Rascall flattts
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This is just the first phase you are going through. You just need to tell yourself it gets better, no matter how it reacts. The first thing....You need to be happy you have AA and stop feeling bad for yourself. There are many children and adults who have cancer. AA is just a disease that won't affect us living our lives. You just have to stop becoming self conscious, and live your life. If people stare, who cares! They don't know what you've been through and unless they care enough to ask...KEEP ON WALKIN'! You have many supporters and that is something we all should be proud of. We are a community.
If i went through it in 5th grade and still has a bald head...you can do it too. Just thinkk about the bright side. FLAUNT IT! I believe a bald head is nothing to be ashamed of(spots too). You'll get through this. I promise.
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Permalink Reply by paula on
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having gone through all of this 28 years ago, i still vividly remember the dread and the fear and the loss of feeling that i had any control but times of changed. worrying won't help the alopecia. i know that is easier said then done, but there is so much more help out there now. there are gorgeous wigs available, should you ever need one, that look so fabulous that no one would ever know! as for your eyebrow, get with a cosmetician who will help you with powdering to make it look as good as new...and it only takes a minute! there is a great gal who i have had a great client relationship with for years and she sells wigs at all price points..on ebay she is under tales_from_a_palm_beach_closet, i believe, but you can also look her up under yaffa wigs and you will see her....her name is samantha. stay close to the alopecia organization....get their news letters....they are full of information, what is being done, as well as providing a lot of vendors to help you with your needs...eyebrows, eyelashes...extensions...etc. so even though i know this is rough, it doesn't have to be if you reach out to all of us who will be there for you. whatever you need, or are going through...put it out there. we are all here for you 24/7.
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So sorry for you. My daughter has been dealing with small bald patches for about 18 months now. Initially we were told by our GP it will go away and can be caused by nerves. We went to a counselor, which was great, but still after several months, another spot occurred. Right now we are praying it is in remission but are always in constant fear of yet another spot showing up and ultimately losing everything. We did see a couple of dermatologists and received several lotions/steroid creams for the spots. My daughter has a fear of needles so not likely we will go the injection route. This site has so many really brave incredible people on it. I hope you find it helpful. I am interested in knowing where to go for the best research as had heard that a treatement that works could be available in the next five years. Also, interested if anyone has looked into this being a hormonal thing. My daughter had her first spot right around the time she was going to get her period for the first time. Her periods are not always consistent and pretty heavy so are considering birth control but I read somewhere that going on the pill can exacerbate the alopecia. Appreciate anyone's input on that. Hang in there Danielle. Looks like you are getting some great advice from the group.
Heart broken mom....
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Permalink Reply by Bald and Fabulous AKA Terri on
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You are not alone, Danielle. I have been where you are on many occasions. And I agree, those injections are the worst thing I have ever experienced and from talking to so many people here I did them for way longer than most. And they do work........sometimes. I also remissioned for many years.
By joining this site you will meet some truly wonderful and inspiring people. You will learn much and gain so much support in all the stages of this disease. It has been a life saver for me. Also you meet some life long friends.
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Hi Danielle
I'm a fairly new diagnosis too, 3 months. I got my first bald spot a year ago at the back of my head, I didn't think much of it as I'd gotten my hair stuck in the vacuum - the rug beater part - and even my doctor thought it was trauma induced hair loss. Then I got a second one at the end of February, this time very noticeable by my ear. I was devastated, but then the worst came. Within 2 weeks I had lost 90% of my hair! Then I thought I would keep my eyebrows and eyelashes etc, but no, within a month my eyebrows were gone, then my eyelashes and other other body hair. It has been devastating and puzzling. And I've been to every regular and alternative doctor out there. Some say stress. Some don't. There is nothing wrong in any of my blood tests or hormone tests - all my tests are normal. Apparently I'm a really healthy bald person. I started wearing my first wig, free from the Cancer Society, at the beginning of April. I felt stupid in it and it made my head itch. But you soon get used to all that, within a few weeks or a month - well, I still feel stupid in it, but it no longer itches. Now I have 2 others - a longer one and a pink one! You might as well have fun for this as it might last a while. I'm optimistic that mine will grow back, but I'm also aware that it might not. 40-50% chance apparently. But I hear way more stories of it growing back than not. Lots of people don't lose eyelashes/eyebrows/other body hair - most don't. So you'll probably be ok. I went through a month of heavy emotions, grieving the loss of my looks and my hair. This really has a way of dissolving our false selves - what we show the world. If there is anything good about this, I would say I am way more real (And I always thought I was anyway), more open emotionally (I tell people what's going on for me), and if this is about stress then I'm learning to set way better boundaries about what I want and need to those around me. Be gently on yourself. I got fake eyebrows - the permanent make up ones and it helps. I don't wear false eyelashes but I miss mine! Hope you adjust. The cortisone hasn't worked so far with me, but it does with a lot of people. Your body will regrow when it is ready! All the best.
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Permalink Reply by Danielle on
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Wow everyone, thanks for your overwhelming response to my post, it definitely makes me feel better to read all of your posts. I know it's early days yet and I cannot predict what will happen, but naturally you predict the worst of course. I did not enjoy the injections whatsoever and almost fainted in the doctor's office, so I am not really looking forward to having to go back every 4 weeks.
As far as the eyebrow goes, I live in Vancouver, Canada and the dermatologist has said that doing injections in them could cause complications and damage if they touch certain areas. She has said that she does not perform the injections into the eyebrows, but that perhaps some other doctor's may. However, I am not so sure I could even be able to stand to have injections in that area anyways!
I have dropped off my prescription for the "rogaine" cream and the cortisone cream for my eyebrow, so we'll see how things progress after next week.
I do have a very supportive family and friends which I am thankful for, but I do worry that my boyfriend will find me less attractive if I had no hair...I know it sounds stupid, and he definitely does not believe that for a second, but I can't help but feel that I will be "ugly" and he'll stop loving me.
I have been trying to grow my hair long for over a year now, so to have this all of a sudden occur now is pretty devastating and completely the opposite of what I want! But again, it's early days yet, and so I just HOPE HOPE HOPE that the treatments will work and that things won't get worse. I have looked into the eyebrow tattooing and found a great place here in Vancouver that I will be contacting soon.
It's also incredibly unfortunate that all of this is happening at a time when I am currently not covered by medical insurance so all medications and treatments are out-of-pocket (though I know this is the case in most countries and we are very fortunate here in Canada).
Anyways, thanks for the support...I'll keep everyone posted on any progress over the next while.
-Danielle
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Hi Danielle - I am in Ladysmith, on Vancouver Island. I will be in Vancouver today for a meeting. We should meet up sometime. :)
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Hi Danielle
Please to read that you are feeling happier about your AA diagnosis, I simply want to reassure you that your hair will grow back, and when it does you might forget all about the scariness of it, like I did over 30 years ago. My understanding of AA now is that in some people, especially those who have allergies, develop it as a direct result of extreme nervous anxiety, trauma or severe stress. It is the body's reaction to the 'flight or fight' instinct, it lowers the immune system, and instead of developing some other serious health complication, like cancer etc, the body reacts this way. With that knowledge, therefore, it is crucial that one learns better ways of coping with stress, ie to recognise it when it's happening and take action, ie walk away, don't participate in arguments etc, or tell others you have a serious auto immune problem and have to avoid stress. If that means finding another job, do it, if that means exiting people from you life, do it....... it's also about loving yourself enough to take care of your body, remember the body is connected to your brain and your brain cannot handle stress. I know this now and will never allow AA to come back, I am in control of it and so are you, good luck and I look forward to reading future comments from you, and when your hair grows back & you forget about it & maybe don't come back on this site, then I will be happy for you. Try to remember though, it is like your shadow, it never goes away and will lie waiting for you to forget about it, get stressed and bang, it comes back. Don't let it.
Good health & happiness,Deb
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