Your Experiences

Tell us about your experiences with alopecia

[Amy_AUK Partner]

Seeing as I am busy trying to get some content up and running on here, thought I might as well recap my Alopecia story/experience.

So, I am Amy. I'm 29 years old (30 in a couple of weeks...eek!!) I first noticed a couple of bald patches, about the size of a ten pence piece, in October 2007. I went to see my GP and was told "Alopecia areata, chances are it will grow back". I worried a little, my only reference to Alopecia was Gail Porter, so I immediately thought all my hair was going to fall out. But it didn't. The patches grew back. I thought that was the end of it. Little did I know.....

In February 2010, without any warning, my hair started falling out in clumps. Every morning sweeping masses of hair from my pillow. Back to GP. "Alopecia areata". I was referred to a dermatologist. 6 weeks later my appointment arrived. I had a very large bald patch at the front of my head by then. And another big one forming at the back. I was given some steroid cream. It didn't work. By the time I went back to my dermatologist again, the hairloss was advanced. I was told that he only offered steroid injections for small patches and that mine was too advanced for that. And nothing else offered. And that was that.

I shaved the last (very little) bit of hair off in July 2010 and got family, friends & colleagues to sponsor me. Raised lots of cash for a local boy raising money for an op in the US to treat his cerebral palsy. That gave me a bit of a boost.

And then my eyebrows, eyelashes and body hair fell out. And this plunged me into a bit of a depression. I went to my GP and asked for counselling and was told there was a 12 mth waiting list and offered anti-depressants. I didn't take them (nothing against them but personal choice).

I continued going to work everyday. Felt terrible though but 'put on a brave face'. One Saturday my mum was due to come round to see me and I couldn't face getting out of bed. I could hear the hushed voices of my mum and boyfriend talking downstairs. And then my mum came into my room and I was just sobbing in bed. And there was nothing she would do to 'make it all better'. No plaster or kiss better for Alopecia. Or so I thought....

That Saturday was my low point. I genuinely had a moment where I thought "I can't feel any worse than this". And I thought to myself I have to beat this. I can't let it ruin my life.

Few things then happened. I found the Alopecia UK forum. I found others in this virtual world who knew exactly how I was feeling. They were able to offer advice. The best advice I think I got from Beejay (Beejayz on here!) which was "be kind to yourself" (or words to that effect) and basically allow yourself time to feel down. I was told it's perfectly natural. I was reassured that I was allowed to feel this way. That helped. A lot. Friends and family can be great but they really had no idea how I was feeling.

And then I got me some eyebrows back. They're not for everyone but I got some semi-permanent tattooed brows. And as far as I'm concerned, they gave me my face back. I didn't hate looking in the mirror anymore. I still wanted my hair back but the brows meant I saw Amy again.

And then finally, I met some people face to face with Alopecia and have continued to do that for a while since. I've met some amazing people who I am privileged to call friends. I cannot describe the sense of relief I felt when I walked into a room and there were other bald women like me. It may sound daft but until I met others I still thought those in the forum might be 'make believe'.

So what next? Well, I've reached a level of 'acceptance' about my Alopecia. But that doesn't mean I'm happy being a baldie. Far from it. A day doesn't go by where I don't wish my hair would grow back or don't get hair envy! I still have low points but i now have people i can talk to.

I'd like more research into Alopecia so I set up the research e-petition. I want more awareness so I joined twitter and started hashtagging Alopecia. And I generally wanted more happening with alopecia, so I started volunteering for Alopecia UK in the little spare time I have on top of my full time job. (I do a bit on the social media side of things and am keen to do more to help fundraise).

And my hair? Well, after being told as someone with Alopecia universalis for two years that the chances of being bald forever were far greater than the chance of any hair returning, hair has been returning to my head (and legs unfortunately!) over the last few months. It's very patchy though and I don't like it (never happy eh?!) So I continue to shave my head every week or so when the patchy dark fuzz begins to annoy me. As soon as I see hair returning to some of the patches, I'll persevere with the regrowth and see how it goes. I would like to point out that I have not done anything different to suddenly experience regrowth. No treatment, no change in diet, no less 'stress', no snake oil or onion juice. It's just happened.

I'd love to see more research into Alopecia. I'd love us all to come together as a community and have a voice. I'd love Alopecia to be what crosses a person's mind when they see someone with hairloss. I'd love to see Alopecia UK grow into a charity that can really make a difference, do more than it does already. I'm hopeful for all these things.

Whilst there is no cure for Alopecia, finding others who understand and getting that support has been my plaster or kiss better. Corny or what?!

Phew! That was quite a post.

Amy

[Beejayz]

Thank you Amy for that boost. I want to help others borne out of the hell ali-p has put me through. If only I'd known it didn't have to be that way.....

Perhaps we need a photo of a bald head with one of those funky sticking plasters with a kiss on it!

[Lozziebee]

My Story ... My alopecia experience started when we were about 16, I think it was either exam pressure or boyfriends ! A combination no doubt! and over the years I have had AA with the round circles of patches at times a dozen or so and other time complete regrowth.

About 5 years ago (aged 35) I stared to lose massive patches on the side of my head and some grew back but only for another patch reappear on the other side! Then about 2 years ago it all fell out over a period of about 6 months, my beautiful golden blonde hair was a scraggy ole mess. I could no longer cover the patches with creative hair styles so, I decided to wear a wig, which helped with my confidence and self esteem, but this was short lived, as my body hair and finally my eyebrows and eyelashes went. That as I have now heard from many others, is the hardest part to lose as it somehow takes your identity with it. Over the last 18 months I feel like I have been through a process of mourning and bereavement.

12 months ago I also lost a well paid job and with the hair-loss I have also suffered terrible depression as the emotional stress and the difficult job became to much, I was also in the process of buying my first property. Luckily it was coming up to the summer season and I was able to find seasonal work to pay the mortgage! So all in all it was a horrid year!

But a month ago I turned a corner and decided to tell everyone (via Facebook first) about my condition and that I wear wigs and make-up to cover up. Why? Well for me this is two fold. One, it has given me such a sense of relief and my friends and acquaintances (and even their friends ) have given me so much support and love. It has helped my self confidence and self esteem Which in turn has allowed me to have more fun with my alternative hair and so now, one day it can be long, or short, or blonde or brunette!

Secondly, I would like to help others, support young women going through the same and bring awareness about the condition to such a rural place like Cornwall. ( life is a bit slower here and many people still quite prejudice about many things!)

Like so many other alopecians I dream of the day my hair may grow back, but i have reached a level of acceptance and wont let it hold me back any longer!