I know that's such a huge question but you can always change "your" world even if the world itself seems to big to change.

Since I was in my 20's, I've written articles about being different and spoke at events and conferences. I am currently finishing up a children's book.

I have a desire to use my difference to make a difference.

Emily Dickinson said in a poem...

IF I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

What about you?

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Replies to This Discussion

I *love* my bald head! I definitely consider it the biggest teacher and blessing in my life. When I first lost my hair at 11, I know I thought, "This is the worst thing that could ever happen, no one is ever going to like me and I will never be able to do all the things I want to!" Pretty soon, I realized there were a lot worse things that could have happened...besides having no hair I was perfectly healthy! I soon felt like I was learning lessons about compassion, understanding and love for humanity that I don't think I would have experienced if I hadn't lost my hair. I wore wigs for 19 years and would never let anyone see me without my wig on. It was the year that the NAAF conference fell on my 30th birthday in Washington DC that I decided to attend for the 1st time and just before that I had decided I would no longer wear wigs.
I have written a children's book and one of the biggest blessings is now I go into schools and speak to children and educators. I've found that the 1st thing I need to speak about is the fact that I have no hair...to get the attention of children and adults. I have embraced this and now have the simple though not always easy idea of "Just Be Yourself" be the 1st lesson I teach in my program called "Self-Esteem through Love: Empowering our Children to Shine!" I am clear that standing in front of 100's of students and sharing my message allows them to know that no matter how they may be feeling or what they might be going through it is possible to not only "Be Yourself" but also to "Love Yourself!" I feel so blessed that this is now what my life is for...and I look forward to finding even more ways to spread the message and power of love...and you can bet I am going to lead with my bald head :-)

Keep Shining!

I would love to do what you do but never have either the nerve or the resources to get it started. I really want to put together a group for alopecians in southern ontario or the tri-city area in which I live (Guelph, K/W and Cambridge). I just wonder to what extent I need to take things and doing this alone is big and scary. I don't have much support at home and get most of my strength from people who live miles and miles away. But this is something I REALLY want to do. How did you get into publishing your material and speaking to groups??
Before I lost my hair, I always blended in. Alopecia has given me the opportunity to stand out. At first, like most of us, I didn't want it. But as years went by, I realized that my alopecia gave people an entranceway into my life. Most of the time I do not have to find opportunities to interact with others, I find that others come to me, in shopping centers, schools, hospitals, airports, restaurants, at the gym... the list goes on. I guess my bald head is a magnet for people who need or want someone to connect to.
I am going to be filmed on 29th march for NHS, An old school friend of mine works as aproducer she got in touch with me a few months ago saying that she is making a series of short 20 min films on different conditions to help people who may have just been diagnosed have an insight, one of these films is alopecia, she will be coming to manchester from london on 29th march to interview me on my expieriances and then she is going to watch me have a wig fitted at my shop, I cant wait to do this as i feel i will be helping people with my condition and hopefully show them that you can lead a perfectly normal life and be happy.
I will keep the site posted as to how it goes and when they put me up for an oscar i will give you a mention in my acceptance speech ha ha
Hi Claire

Great to hear about your forthcoming movie career! It sounds like such a good experience and so worthwhile to share with other women - I hope you get your Oscar! I'm a milliner working in the UK and also with the NHS and I'd love to hear not only how you get on in the movie but also about your years of experience with alopecia. Could you contact me when you have chance? I've not been a member long so I'm not sure how that works but I'll leave my name at the end and hopefully you can track me back through my profile. Good luck. Nicky Zip
I did my short film about my life with alopecia!!! It was really good I was interviewed first i was asked a few questions like how old i was when i was diagnosed, how i feel about wearing wigs what the good and bad points are, How my family have coped with this, what type of alopecia i have etc....
I was told i am a natural ha ha Im the next davina mccall, and i also have great cheekbones apparently which i was very happy about!!!
I was then asked to draw my eyebrows on whilst being filmed and sit at my table and brush my wig???
We then went to my wig shop to see me being filmed trying on different wigs my mum came with me she has not seen me without my wig for along long time, dont know if she was shocked by how much it has advanced i dont think she realised i was completely bald.
For the last few weeks i had been looking into hair replacement systems it is basically a real hair wig that is custom made to your scalp and stuck on with a gel, this means you can go swimming, wash your "hair" in the shower, and obviously it doesnt blow off and it lets your head breath, these need to be restuck every 4-6 weeks by the specialist, they cost about 1,500 for a medium length but prices vary in regards to colours length etc.... you can also style them ie straighten, curl apparently the woman i spoke to from the clinic said they change your life, I was supposed to go for my consulatation today and i was 100% certaain i wanted it done so my partner had his cheque book ready and tears rolling down his face haha, but all that changed saturday when i went to the wig shop, I was trying on different wigs when the owner came out and said she had a new wig just in that was basically ME!!!! I put it on and i was absoloutly thrilled I loved it!!! its a synthetic dark brown with aubern streaks it is in the style of victoria beckhams hair, straight away i said i want that!!! NOW ,then my mum said what about this it was a long very light brown with different coloured brown and blonde streaks and i was OMG i want this one so I got both!!!! ha ha with a little help from mums purse he he, and it got me thinking if i was to get the hair system i would have it for 2 years yeah i can style it but how time consuming would that be compared to a synthetic wig i can just put on my head and how many people can be a long haired fair haired person one day and the next be a short dark haired person the next, my mind was made up, i dont find my wigs that uncomfortable, I never evr go swimming and dont really want to so that wouldnt change my life and yes there has been the odd occasion thewind has been that bad it has blown off but I can live with it, Hair Replacement System would probably change some peopleslives but ill stick to my lovely wigs,
Anyway back to me and my short film, it should be edited and all ready for my premier ha ha by May sometime, it is going on the NHS website so people who have just been diagnosed can get an insight into life as a bald person and how its not really that bad!!!! I was very positive all the way through the film and i hope my confidence and positivity helps sufferers, I will let everybody know when it is finished and give you the webpage so you can all have a laugh!!!!
Hi Claire
Thanks for the post. Big respect! What a fantastic achievement and so urgently needed for women with hair loss. There appears to be a real need for accessible information that goes beyond the initial shock of hair loss and talks about life - day by day stuff - without hair. You have helped to break down so many barriers with your short film. Did you talk about your initial reaction and subsequent thoughts on the hair replacement system to camera? It's fantastic that you reached the conclusion that you have - how liberating is that!

Apologies if I'm going over the top here but I work with women who range across the spectrum in how they are coping with hair loss. At one end there seems to be a lot of feelings of guilt/shame and at the other, women who are getting on with life and are stronger because of their hair loss. But there seems to be little information available about how you get from one end of the spectrum to the other. Time might be a great healer but its cold comfort if you're just starting out.

So brilliant, I'm glad it went well and please, please remember to email me the link when you get it. Nicky Zip
I am so amazed reading everyone's posts! I may need to change this group to "Lifestyles of the Rich and Famous!" LOL!!!

Keep on changing the world!!!

Well my mini movie has gone on NHS web site, jeez i look HUGE!!!! argggghhhhh not bothered about the baldie head more bothered about the shiny face and how big i look!!! haha the camera does put 10lbs on you (thats what they say)
But i didnt do it to look like a super model i did it because i want to make a difference!!
If one person sees it and thinks hey!! if she can cope so can i thats making a difference isnt it?
Oh yeah My accent is so northern its weird!!! i never realised haha
Hi Claire

Just viewed your film - fantastic!!!!! Don't be daft, you don't look huge. I thought the darker wig looked fab on you and really made your eyes look huge. Just brilliant that you've done this and I shall certainly be trying to link it up with my website. (Technically that might take a little longer!) I hope you go on to do more films....! Nicky Zip
thanks for the lovely comments!!
I have since bought a shorter wig think i have it on in my profile pic, and i also have got my wedding wig which is fab it looks so real my wedding is this saturday so i will be able to finally wear it (its been hidden in the bottom of my wardrobe away from hubby to be hehe)
I have grown to love all my different wigs and if i have any advice for people who are just starting to wear wigs and are finding it a bit daunting try different colours,styles because you CAN!!!! this is your perfect exuse to play around with different looks and it is fun!!!
Congratulations!! How exciting..I hope the sun shines for you and you have the day of your dreams. Enjoy every moment and I wish you both much happiness together. I hope you are going to post some of the wedding pics here. Good luck. Nicky Zip



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