Thursday, 10 September 2015

Alopecia AWARENESS Month!!

Erin's story of her head shave made it into our local news!! fantastic piece of Alopecia Awareness just ahead of September Alopecia Awareness Month!



Then after this, we were called by ITV Anglia News and asked if they could come and film Erin and chat to her about her alopecia, her head shave and also this blog!! Erin and I were both super nervous but really pleased with the final piece that aired on TV:



Erin's fundraising has shot up now to £910!!! If you can help us break the £1000 barrier for Alopecia UK that would be amazing!




Monday, 24 August 2015

BeBold Alopecia Kids Camp

5 Favourite things about BeBold Alopecia Camp for Kids

THE THEME: It was an Indian & cowboy theme. It makes it even more fun with the guns and bows & arrows I ran through the forrest shooting indians (I was a cowgirl).




THE TALENT SHOW: seeing all the other kids sing, dance etc, with confidence with their alopecia, it made me want to do it next year. PS I'm going to be playing the drums.


MARSHMALLOWS AROUND THE CAMP FIRE: there was loads of different sized marshmallows (huge, small etc) plus I love cooking and eating them.

MAKING FRIENDS: I made new friends and also met old friends. It's excellent to be around other kids with alopecia because I know I'm not alone.

SAMSAM BUBBLE MAN: there's this bubble man who also has alopecia. With 9 world records, 3 blue peter badges! He's made a bubble so big 50 people could fit in it! And made a bubble with 56 bubbles inside!
                                   
me blowing a bubble with my hands
                                       
I CAN'T WAIT TO GO NEXT YEAR! :) :D

Wednesday, 22 July 2015

Head Shave for Alopecia UK

Because so much of my hair has fallen out now I wanted to shave it. Dad said he would shave his too so I didn't have to do it on my own. Mum suggested we get some donations for Alopecia UK too as they've really been good for us.

I was really nervous and Mum said as it's the summer holidays I could get my ears pierced to cheer me up. It was scarier getting my ears pierced than getting my head shaved!! They used a weird gun thing to put the earrings in.

After a day chilling with Mum and Jake I shaved my Dad's head! First we shaved it into a mohican for a laugh, we all thought he actually looked pretty cool! He felt soft like puppies ears!!




When it was my turn I was nervous and excited. We shaved mine into a mini mohican too and I decided it was really cool so decided to keep it with that little bit on top! It was a surprise to see exactly how much has fallen out now it's shaved... one side looks like a leopard!


FULL GALLERY OF SHAVE BELOW:

So far (when we wrote this) I've raised £530.50, our target was only £100!!!! I feel so proud at how much I raised, click this link to donate....

https://www.justgiving.com/Epic-Erin-n-Big-Daddy-J/

When I first looked in the mirror I can't believe how much I liked it, I even feel better about my alopecia.




Wednesday, 24 June 2015

NHS Wig fitting!

Today I went back to the orthotics for my NHS wig. There's a children's waiting room with colouring and a TV with cbbc on! Everyone there is really nice, especially Sarah, she's the hairdresser.

Sarah had ordered in 3 wigs, one was too dark, one was too auburn and one was juuuust right! (sounds like goldilocks!!). Sarah put the best wig on me without looking in the mirror until it was all on so it was a surprise.

When she showed me in the mirror I thought "wow" it looked like human hair, literally! But it's synthetic! I really liked the length too, it's shorter than my other wig and has a fringe.

My new wig!
She helped me to put it on by myself which has helped my confidence as I want to be able to do it myself. It will be much easier for swimming at school and things now I can do it myself.


I was a bit upset this week after even more hair has fallen out so getting a new wig today AND learning how to put it on all by myself has really cheered me up!

My patches - Mum took these for me tonight

Saturday, 16 May 2015

For Daisy x

Hi Daisy, your Mum told my Mum that you read my blog and that you just found out you've got alopecia.


It is a bit worrying when you first tell your class mates, I was really nervous when I did but after I did, it was just fine and the more you get used to it the more they get used to it too. They might ask questions but it's usually because they've never heard of it before!


My hair first fell out with some patches a year and a half ago, to start with I used to wear hats and hairbands to hide it. I was a bit scared because I just didn't know what would happen.


You can see more of my bald patches now as my hair used to hide it but the patches are much bigger. I've got about 45 hats, some days I wear a hat, somedays I wear a bandana or a wig (which I've only just got). I don't wear anything for PE or swimming and no-one says anything, everything is just the same, they just know it's me now.

This is me without a wig, with a hat and with my wig

It is a bit nerve racking at the beginning but having alopecia doesn't change who you are. If you ever have any questions you can ask me, I don't know much about alopecia but it's less lonely when you have someone else to talk to who has has it.

Monday, 20 April 2015

Easter Holidays

Irchester Country Park
I had a nice time at Easter, lots of time with my family and friends. We've been to Corby swimming pool, the slide was EPIC. We walked the dogs lots and went to Irchester country park and Sywell country park. I had an awesome time at Wicksteed, my favourite rides are the pirate ship and the huge green rollercoaster!!

Me on the pirate ship!
Just getting off the pirate ship with my dad

Driving the dodgem car with my brother
The big rollercoaster (I'm on there!)
Unfortunately more of my hair has fallen out and I asked Mum, if I could get a proper wig for school. Mum & Dad took me to a wig shop that specialise in wigs for people with hair loss.
It's almost completely gone at the back, my left side and now down my parting too.

We sat in a waiting room when we got there, I was half nervous and half excited. I was nervous because I don't know who on earth he is and I was excited because I might get a human hair wig, this makes me happy, it will be nice not to worry about my bald patches. The man was really nice and a chatterbox a bit like me! He showed me different styles of wigs. I got to brush them and it is good because it doesn't hurt my head!! We're going back in a couple of weeks to try some out in my size and colour.


Sywell Country Park
As it's been hot, Mum let me choose some bandanas to buy, I really like them, they are more comfortable than wearing hats all the time and Mum wants to keep my bald patches out of the sun.

Thursday, 26 March 2015

Hair loss & Wigs

After my bath one night Mum noticed more hair than usual stuck to my shoulders and arms. She had a look at my hair and found more bald patches. They were at the sides and at the top, I was upset because it's spreading and going to more places (not just the back!). One of my eyebrows is getting really thin too.

these were taken at the beginning of March they are bigger now

Mum talked to me about it and about that maybe if more falls out we might have to get a wig. She said I didn't have to wear one, I might like to just cut it all off. She showed me photos of girls with shaved heads and we looked at wigs on the internet.

I actually got excited looking at the wigs! We also visited a friend called Amy with alopecia, she wears wigs all the time except at home. I got to look at her wigs and try them on. Amy gave me a wig she doesn't wear to have a play with at home and get used to having a wig around. I was really surprised that she was wearing wigs because you couldn't even tell!!

The wig Amy gave me
Since this I've also had to stop eating CHOCOLATE! it has been making me sick, the doctor says I have a periodic syndrome called cyclical vomiting. I was gutted as it's so close to Easter. Mum bought me a purple wig to cheer me up. I LOVE IT!!! It's my rock-chick-chicky-rock wig for at home. Purple is my favourite colour and I've said right since I had alopecia I wanted a purple wig!!


If all my hair does fall out, I will get a proper human hair wig but wear my purple one for parties and whenever (except at school!).

So even though I am scared about maybe being bald, I am excited about how much fun and how many hairstyles I'll be able to have with wigs.

Saturday, 21 February 2015

New Hair!

A few months ago I had a bit of hair growing back we found out because I always ask if mum can take a picture of my bald patch because I can't see it plus it's round the back.



Sometimes the patch gets bigger but sometimes a bit grows back. Although my patch has got bigger, my new hair is getting longer. It's exciting that my hair is growing back a bit. The really annoying bit is that even though it is growing it's still confusing because I don't know how much it will grow. My family are happy too.

It looks like a big mexican moustache!!
It's good to have fun with your alopecia!