Alopecia Areata Saturday, May 26, 2007


March 2006 our world was turned upside down. I write this and then think of what my friend Sheye has been through recently and think well not really upside down. But at the time it was devastating and actually Sheye was one of those beautiful people to ask how I was and give me kinds words to get me through, as were a few others. Some of my friends still to this day don't know what we all went through.

I'd noticed a spot on the top of Georgia's head where her scalp was a different colour and it seemed that her hair was thinning. Then I noticed another one at the front of her hair line. I said to Mark I am going to take her to the dr the next day to see what it is. A little time later as we were getting ready to go out for dinner I put her hair up and at the back on her hair line was a huge amount of hair missing. My heart skipped a beat! We went to dinner and I just watched her the whole night wondering what on earth was wrong.

When we arrived home I put the kids to bed and then googled hair loss and children. What I came up with was devastating. I self diagnosed through googling that she had "Alopecia Areata". I know I know don't google!!!

"Alopecia Areata" is an Autoimmune Condition in which the immune system, which is designed to protect the body from foreign invaders such as viruses and bacteria, mistakenly attacks the hair follicles and the hair falls out in patches all over the head and sometimes body. This condition is not life threatening and doesn't even hurt but the emotional and psychological effect can be devastating.

  • If the patient loses all the hair on his/her scalp, the disease is then called Alopecia areata totalis.
  • If all body hair, including legs, arms, eye brows, eye lashses is lost, the diagnosis then becomes Alopecia areata universalis.
  • If the patient loses a few spots on their head it is Alopecia Areata.
Of course as any parent would be I just lost it. I took her to the dr the next day to the first one I could get into. He looked at her and said it looks like Alopecia Areata and I said "I know". He said "Unfortunately there isn't much you can do about the condition and then fell silent". Fuck is all I can think of. As I write this it hurts me so much and makes me angry that this has happened to her.

Mark got on the phone right away to a wonderful lady here who is the one in charge of our local Alopecia Areata support group. She was just so wonderful and supportive. Every time I spoke to her she calmed me down. It is a weird condition. Whenever she falls pregnant she gets full regrowth of her hair and then once she has her baby her hair falls out again. I think this must be because your immune systems lays dormant for a while so it doesn't attack the baby as a foreign body thus allowing your hair to grow back. And yes it can grow back. One awful thing about this condition is nobody is the same. It affects people in all different ways. I have heard of children waking up in the morning and having lost their hair overnight.

Ok back on track. I booked in to see a Trichologist who is an expert on skin and nails. Not a professional like a dermatologist more like an Naturopath. Anway she was weird to put it mildly. I think she may have done a few pills before she saw me or a line of cocaineLOL. She gave us some magic powder which G had to take twice a day. Anyway didn't do a darn thing. After everything I read I came to the realisation that if it was going to regrow it would by itself. Nothing that you do makes much of a difference or for very long anyway. But it was getting worse. I couldn't put her hair up anymore because she had lost so much. But after much talk with her we did start putting her hair up. She knew what to say if someone asks about her hair and her wonderful Preschool Teacher was there to help her as well. Thanks Janelle for all of your support through this. I would ring Janelle from work just to see how she was, especially if she had worn her hair up that day and you could see her hair loss.

Late last year I went to see a Dermatologist. One of the top ones in Brisbane, my dr even said he had stopped taking patients. But I think because she was a child with this condition he agreed to see her without even hesitating. He explained it all to me and confirmed that it was AA and gave me some steroid cream to put on her head once a day on all her bald spots. I so don't like steroid creams. G had excema as a baby and I refused to put cortizone on her. But I was desperate. The thought of my baby having no hair was not something I wanted to contemplate.

Forward to today and she has full hair regrowth YAY!!! Everytime her hair gets wet and I see some gaps (which are completely normal) my heart skips a beat. Georgia will always have AA it doesn't go away. She may never ever get a recurrence again (lets hope). It may come back soon, in a year, in 10 years, in 50 years. I've spent to so much time crying over this condition. I would be on the bus on the way home from work and just cry. I think it is that time just sitting and thinking. No it isn't life threatening it won't debilitate her but hey kids can be nasty!

I can't believe how many other autoimmune conditions there are out there. Scientists just can't figure out why out body turns and fights itself, some conditions are - diabetes, arthritis, lupus, MS (they think), Celiac, Chron's, Graves, Chronic Fatigue just to name a few of the better known ones.

How could something like this happen to someone so sweet!
Luv u
Mum xx

123 comments:

T said...

oh Sue you and little Georgia have been through so much! Everything crossed she never has another recurrence.

Auto immune problems are the reason Zac and Grace were born early. I have antiphospholipid antibodies and my immune system attacks the placenta, as it recognises it as foreign. The immune system is a great thing when it works correctly but when it turns on itself it cause so so so many problems.

Kate said...

Sue, I understand the devastation that you would go through - we all want our children to be perfect and when they aren't - well we find it so so hard. Alopecia can be very debilitating - anything to do with our appearance really is hard to deal with. I so hope that the gorgeous Miss Georgia doesn't get a recurrence.

My very good friend, Paula, from my highschool days has Alopcia as well. But hers is much more severe than Georgia's. Paula started losing hair in her mid 20's. She was our bridesmaid in 1990 and she lost hair soon after that. She was a model and has gorgeous bones. Her style now is very funky and full of fabulous headwear. She is married with 3 children and has tried so many things. She now just goes with the flow.

I am not sure if what I have written will upset you - it is not meant to - it is meant to show that there is a great life out there even if there is something that is not the norm.

Lots of love and hugs...

k8

Sue xx said...

Thanks girls.
Yeah T it is amazing how our body can turn on itself. I never knew that so many of these things were autoimmune.
K8 no you didn't upset me :) Of course we want our children to be perfect and more so well. It was just knowing how hard school life is and then throwing this into the equation. She was fine about it and we talked about why it was happening and what could happen. She used to show people her hair loss and if she lost it all wanted one of those multicoloured wigs LOL Through it all I only hoped that she kept her positive attitude. I am amazed having gone through this and talking to people how many people actually have it. So many people i know, know of somebody with it. Your friends sounds great. You are right I think it is the person that can deal with it and not make it an issue and live life :)
Sue xx

Brissiemum2 said...

You know I've talked with you about this before so know how difficult it has been for you to go through. G is lucky she has such a loving and caring mummy though!

Caro said...

Hi Sue
Just sending you some positive vibes for when you have another bad day. Georgia is gorgeous and grown so much from the day we met her.

Vanessa and Kara said...

MWAH to you babe.

First of all, don't you DARE feel bad for feeling like you do. There are always people worse of that us, but that doesn't mean we can't react to our own problems with tears. As Kate said, we ALL want our kids to be perfectly healthy/happy and when they aren't, it's bloody hard.

Fingers crossed for you and Georgia ~ she's on a winner with you as her Mummy xxxxx

Rachael said...

Hi Sue ,
First I wanted to say that is an adorable photo!
Second , you must have done a wonderful job with her, for her to already be seeking a positive answer to the worst case senario (with the multi-coloured wig :-)
Hopefully that was the beginning and end of the problem and it doesn't arise again for you both.
But with an attitude like Georgia's she's gonna be fine regardless.

Sue xx said...

Thanks girls for your support!
Yeah Karen you were great when I was feeling crap about it all :)
Sue xx

Lea said...

Oh hon..I am sorry to read about Miss G. My Mum has Alopecia. Like you say she may never have a reoccurence & if she does you will be there to help her. She is so lucky to have you as her Mumma!
Thinking of you
Lea xox
ps got a copy of the photo with our girls all in the bath together? I'd love one.

Anonymous said...

i feel so bad for you im sorry that happened

cna672 said...

Hello from the States. I feel your pain! My daughter has this too. When she was 8 months old, she lost all her hair except for a small patch on the top of her head. A dermatologist said that it was normal and would grow back.

In a year, it did all grow back and I was relieved thinking that it was behind us. However, now, she is getting bald patches again. I took her to a specialist in dermatology and they confirmed AA. My heart aches for her . . . Again, I know your pain and have been quite distraught too. I pray that it contains itself this time but I just don't know . . .

Anonymous said...

Hi

well im not very old well im only 10.
with that disease alopicia areta
i just need a few tips as i keep worryong someone will see and laugh at me im worried it will get very bad as i hafe 1 big patch and several small patches.ive been to the dermatoligist centre and they said white hairs mean it will grow bacck and black hairs it will persist.

XYz said...

I am 23 year old boy. it's been 4 month since i have alopecia areata. I have long hair and my patch is at the back of the head so its hidden. But the patch is getting bigger. Every morning i wake up the and first thing i think about is my F**king hair... its devastating... you cannot help but hate the fact why that happend to you, i think about going bald, because i am tired of hiding it. it worries me all the time. I am getting tired of this.
My alopecia occur:
- during my Final exam
- i was in process of growing long hair
- i applied a new shampoo name 'puerelogy'

nothing have help so far, not even steroid injection or cream... its affecting my studies, my social life and more over making me depressed....

I pray that alopecia never touch you daughter again. it was nice reading your blog.

If any one know any thing that have work for them. please contact me through this blog

Anonymous said...

Hi there ..
I know how devastating the emotional effects of AA can be .. i've experienced male pattern baldness (at the age of 15, kinda sucks) and it all grew back and i had not a care in the world. So now this alopecia areata business pops up and i've had it for about 8 months on and off, but mainly on.

I got the injections, the homeopathics, oral pregnicalone .. all that jazz, but nothing works.
Sometimes the best way to battle it is to read other people stories and hope for the best, so thanks for your story :)

xo

Anonymous said...

My daughter has AA, just diagnosed at 4.
I am scared to death. I need to know how long before Georgia's hair started to regrow and if it has ever returned ( the aa). Do you think the cream made it grow back faster?
Can you plese be so kind to email me? I live in Richmond Va 23112
donnasking@comcast.net

Anonymous said...

My daughter is 6. diagnosed with aa at 4. Its horrible i feel pain for her everyday when she asks why she doesnt have hair. She refuses 2 go 2 school now, so we purchased a wig 4 her. the first thing to come out of her mouth when she seen herself in a wig was "Is my teacher going to be nice to me now" now i have an idea why she suddenly stopped wanting to go to school. So anyway wishing you and daughter the best...

Anonymous said...

So your daughter's hair never grew back when she got aa at4?

Anonymous said...

That is wonderful that your daughter's hair all grew back. Do you attribute that to the steroid cream? Or was it just over time that it regrew?
Also, may I ask if your daughter suffers from any allergies or asthma?
Thank you.
Worried mom in NJ

Anonymous said...

Hello Sue,
My daughter has alopecia and while searching some answers on the net i came across your post. Georgia is a beauty, i really hope she will never have a recurrence of alopecia.
I just wnated to ask you a few questions. Is there anyway you could send me an email at efiallka@hotmail.com?
I was curious how long it took for Georgia to have full regrowth and when did regrowth start after the loss? Aside for steroid cream, did you use anything else?
Thank you.
Ala.

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