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 Vicki on
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early 2008 I started out with one spot and eventually, probably 6 months later I had no hair anywhere on my body. I went with a group of other ones with alopecia to a tatoo artist for eyebrows. I thought he did a great job. I didn't participate, because I thought of the fact, what if my eyebrows come back. I found some good water proof eyeliner and I was good to go. It didn't sweat or melt off. Well here we are and I have full eyebrows, body hair, and the hair on my head is fine but its there. So much for being AU. Believe and be free. Just a side note...I'm not a big fan of shots to the head, I just don't think getting my hair back is worth the possible side effects. I wish you well.
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Permalink Reply by Sherry Washington on
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Hi Danielle,
I remember going through this for approximately ten years. At first, it worked out and my hair grew back, but eventually it began trailing. One spot grew all the hair, then another spot occurred. I am so happy to be past that and accept me for the beautiful, bald and free person. I wish you much success perhaps yours may be different from mine. In case it's not you are in the right place because initially I didn't have any type of support, but it's good seeing and knowing that you are not in this by yourself.
Blessings unto you!
Sherry
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Permalink Reply by nojash on
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Hi Danielle,
I was diagnosed with AA about 2 years ago. It started with a small bald spot on one side of my head, then a few others, bigger ones and then 2 orange size ones on the back of my head. Needless to say, I was devastated. I lost about 2/3 of my hair.
The doctor told me the same thing about shots and creams. Going through all that and if it didn't work would be more devastating. My doctor said it can also grow back on its own and may even go through the cycle of hair loss again. If the medications do help, when you stop them, more than likely the hair loss will come back. So I opted to let nature take its course. I was stressed and cried a lot, feeling sorry for myself. Well, that soon stopped when I discovered a lump on my neck by the back of my skull. Right away I thought it might be lymphoma. The doctor did an ultrasound and thank goodness it was just some fatty tissue and was not cancerous.
That changed my whole way of thinking. I could have had cancer and I was upset because I lost some hair which is not life threatening. And then I thought about all the people young and old who lost all their hair, some forever, what they have to deal with. I said to myself, shame on you, be thankful for what you have and what you are. I went out and bought a couple of wigs which I would wear only if I was going somewhere special, otherwise I wore a lot of hats. I promised myself I would try to be an inspiration to others.
So the last 2 years my hair has grown back in those spots, new ones came and went, now my hair is finally starting to look somewhat like it used to, but it is not the thickness I am used to and doesn't seem to have much life yet, but I'm definitely not complaining. I do have hypothyroidism when some say can contribute to AA, but I've been hypo for 20 years and this is the first time I had hair loss. I am taking Vitamin D3 which I heard is good for your immune system and can help hair growth. In the warm weather I try to get about 20 minutes or so a day of sunshine, the natural vitamin D.
Stressing about it is counterproductive, so please try to be strong and an inspiration to others and don't be ashamed to let people know what you have if they look at you funny, lol. You have a very good chance of your hair growing back on its own. I don't believe in adding insult to injury by putting chemicals on and into my body which can cause more health problems....bad side effects and stress you out even more.
You came to the right place for support. It was a great comfort for me when I first got AA. Keep your chin up and God Bless.
Norma
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Permalink Reply by Patti Clum on
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Hi Danielle,
I completey understand how you feel, and it is a very scary thing at first. Hopefully in time, you can realize the gift you've been given, that's right - in the end it is a gift. Below is my story, and I hope it helps you.
About 3 years ago, I woke in the morning to a bald spot the size of a baseball on the left corner of my head, just below the crown. I wasn’t aware of any hair falling out, nor did I find any of the hair that was lost. I wasn’t even aware of the spot at all till my husband pointed it out. He told me about it, and recommended I see a doctor.
My first thought was the hair loss was due to my thyroid issue, so I went to see my endocrinologist. He looked it over, said it most likely wasn’t anything to do with the thyroid, that the thyroid does cause hair thinning, but not hair loss. Then fear kicked in, if it wasn’t the thyroid, what the heck was wrong with me, and was I in danger of a larger more complicated health issue.
Next I went to the family doctor. He thought perhaps it was a fungal infection, and sent me to a dermatologist. So on to another doctor I went. The dermatologist identified what was happening as Alopecia Areata. She told me it is an auto-immune disease brought on by stress. She basically told me that due to the stress in my life, my immune system was attacking itself, and the hair loss was the result. She said this affliction does not affect grey hair, which they do not understand why. She told me that it is treatable, and set me on a course.
Course 1 – A topical treatment. I was prescribed a spray that needed to be applied to the scalp twice per day. Initially, that wasn’t making much of a difference.
Course 2 – She prescribed steroid shots. I had 80 mg of Steroids shot into me every six weeks (40mg in each hip). The first round of these shots were fine, and I did show some hair growth, and strength in the root system. The doctor would test this by actually pulling on my hair to see if it came out easily. Round 2 of the shots wasn’t as kind. My entire body broke out in a rash. I went back to the family doctor who prescribed an allergy medication to combat the rash. Subsequently, the allergy medication then messed with my menstrual cycle, causing anemia. Again, I was prescribed something to combat that side effect.
Next, the dermatologist decided not to pursue the last round of steroid shots (they will only do 3 rounds of those due to the side effects and other medical conditions it can cause), and go back to course 1 with the topical treatment. This time around, the topical treatment started to cause migraine headaches, and such tenderness to the scalp that it made it very uncomfortable to sleep on a pillow. I had to wear a soft hat to sleep in.
I’d finally had enough. I felt as if they were making things worse with the medications, rather than solving the issue. So I went to see a Chiropractor/Acupuncturist/Herbalist, on the recommendation of a friend. I was hoping for a natural treatment for this affliction. He conducted a test called the Meridian Stress Assessment (MSA).
Basically, what this test did was assess the function of the health of organs by measuring the energy of associated acupuncture meridians. From this, he was able to determine what vitamins and minerals I was lacking in my system to rebalance me, and what foods I was eating that were contributing to the imbalance. He then prescribed the necessary natural treatments, and put me on a specified diet to remove the foods that I seemed to have an allergy or issue with.
After about 3 months of natural treatment, my hair grew back in. It was weird though, it first came in white, then turned grey, then blonde, and finally back to normal color. I remained normal for several months, when once again my system became stressed and it started again.
Basically, it starts with very small patches, about the size of a dime. For me, there would be roughly 3 or 4 of them in one area. These patches, as they grow, begin to connect to one another creating larger bald patches. I had about 5 areas on my head where this was occurring. I finally decided not to continue spending hundreds of dollars on treatments, after all – it was just hair. Any more, I can only keep my natural hair about 1 to 2 inches long, otherwise it falls out. Styling products also weigh my hair down too much and cause it to fall out. Unfortunately, health insurance does not cover this type of testing and/or treatment, so it can be quite costly. For me, and the level of imbalance I was experiencing, it was costing me $4,000 - $6,000 each quarter for testing and treatment.
I decided to take a different approach, by purchasing wigs. I took my husband to the store with me. For fun, I tried on a blonde/brown mixture (I’m naturally a dark brunette), his eyes lit up, and I was sold. I purchased my first wig. I wasn’t quite confident enough yet to try it out on my co-workers. Since it was such a drastic change from my “normal” look, I wasn’t sure how it would be received, so I continued to try styling my hair using large bows and hair ties to hide the spots.
One day, I just got tired of spending so much time trying to hide my affliction that I made the leap and wore the wig to work. It was a huge hit. I had so much fun. Initially, no one realized it was me, they thought I was someone new and just nodded as they walked by. But then it would hit them, and they would turn around and say “you changed your hair”. Everyone loved the new look. My husband loved it too, though he would sometimes forget what I looked like if we were in a store, and I’d have to say, I’m right next to you. LOL
At that time, I decided to use the opportunity to increase awareness to this disease. I became an advocate for communicating information to others who either are afflicted with this disorder and/or know someone who is. And, I purchased several more wigs. My collection is now up to some 20 or so wigs of various colors, styles, and lengths. And I have a lot of fun with it.
While some people might suffer some initial embarrassment at my unusual comments about the hair (such as, one lady asked what color my hair was and I told her plastic, actually I don’t know I bought it this way), most are stunned at how beautiful and natural looking wigs are these days and are very inquisitive and curious about the fun I’m having with it. It has changed my life and my perspective.
When I was first diagnosed, I felt like a victim, and thought to myself, why couldn’t it just fall off my legs where no one would notice. Then I realized, it had to hurt so that I would notice it and improve my health, reduce my stress, and change the way I deal with things. I then realized the gift I was given. I was given the gift of changing myself for the better, and having fun along the way.
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Hi patti I have just read your Blog,how fantastic are you.I have been buying wigs and hats since first diagnosed but I am not brave enough to wear them.It has cost me a small fortune but they still remain in boxes.I am a seamstress so I have even been making my own wigs but still have not been out wearing one.After reading your comments it has given me the strength to have a go. it's people like you that make looking at life with AA seem a bit more bare able.Thank you.
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Annmay,
I'm glad I could help with you with your confidence. Embrace the beauty of who you are, not what you look like. We are all beautiful in our own way. You'll be amazed at how much better you will feel when you step out in your new creation. It is such a good feeling when people walk up to me and say - your hair is beautiful. Then I shock them with "It's a wig". Its sort of an ice breaker. I get to tell them how much fun I have with it.
I also tell young girls every day, instead of putting chemicals in your hair to change your look, only to find out you hate it, simply go try on some wigs and see if you like it first. It's much cheaper, and less hazardous to your health.
Enjoy the new you. I'm sure you look gorgeous!!!
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Permalink Reply by Kay on
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Hi Danielle,
I have had AA since I was in 4th gr and I lost all of my hair. At that time, my family could not afford any wigs or hair pieces, and I had to wear hats. As a 4th gr girl, I will admit that was devastating. I have been totally bald (with rare exceptions of a small patch or two that comes and goes) since that time. I have half an eyebrow on my right side, and just recently my left eyebrow is starting to get a "stripe" of a bald spot down the middle (almost like I have two eyebrows). Now, at 30 yrs old, I can say - first of all - that my half an eyebrow is one of my favorite physical features. It's what makes my face unique. Most of my friends/family/colleagues don't even notice it unless I point it out. When my boyfriend and I first started dating, he noticed and asked about it. He said (and still says) it part of my "weirdness" (our intimate way of saying uniqueness - we value what is "weird" about each other). So many people spend so much time/effort/money trying to make their faces unique (piercings, makeup, ect) - when I get my "weirdness" for free. At least that is how I look at it.
As far as the fear of loosing all (or more) of your hair: I will never forgot what it was like to go through grade school, junior high and high school as "the bald chick" - and I will never minimize those feelings to someone experiencing that fear and helplessness. I choose not to go bald and I wear a hair piece. I have seen plenty of people who choose to go bald, and I think every single one of them is perfectly "weird" (again, meant as a compliment!!) Some of the most strikingly beautiful women I have ever seen were bald.
The most important thing for anyone diagnosed and/or living with AA is surround yourself with people who love and support you. You didn't say what your social environment is like in your letter, so I hope that you have family, friends and loved ones who appreciate you for you. Over time, no matter what happens in the course of your AA, I hope you can find and accept your inner "weirdness" - it took time for me and everyone has their own path. And sure, some days I wish I had hair. But then I think of all of the things I do have, and I realize that I am pretty lucky. I hope you will realize that for yourself too. Stay strong and stay connected with supportive people and communities!!
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Hi just like you I was diagnosed last month,I am also having the injections But they don't seem to bother me much because I am used to them after having a transplant 18 months ago. I don't know why but the AA has effected me more than being told I had 5 months to live before transplant.
It sounds stupid but it really has upset me. What is it about our hair that makes us feel like this. My way to deal with it is to buy wigs and hats lots of them,the wigs I have worn once and the hats I wear all the time. I would love to colour the hair I have left but dare not. Does anyone know if it is safe to do so.
Thank you for reading my ranting.
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Permalink Reply by chappie on
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Danielle you are not alone we are All here for you . I truly felt the same way at first . But Now I am finally getting the hang of it. I am praying for you that everything will works out. Stay in touch chappie. I hope I don't bother you by saying this don't wory about it . Put it in God's hands .
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This disorder is terrifying, mysterious and fascinating all at the same time. My 10 yo son was diag with AA 6 months ago. It has gotten progessively worse. Two large patches, several little ones's and the one on top is going into a large v pattern. Just recently he has begun to grow hair in his largest spot. No treatment at all. It just fascinates me as to why this is happening. There has to be a root cause. Hope more grows but never know what is going to happen in the future.
Be strong, focus on other things if you can - perfecting a skill, learning a new talent, making a new friend . . . Praying that you find some peace in all of this.-Janet (mom of Dylan)
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Permalink Reply by Lizzie on
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Hi Danielle :) I also have AA, and I know it's hard to cope with at times, but believe me it does eventually get better :) Any time you want a chat, or to unload the stresses of the day, I'm always happy to talk :)
Take Care sweetie :) x
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Permalink Reply by JeffreySF on
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Hi Danielle,
What an amazing amount of support from all the members of Alopecia World.
I know I have received so much support over the years as well.
When you are ready make some connections with your local fellow alopecians. You have a great group of people in Vancouver.
Hang in there!Jeffrey
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