International Alopecia Day, 4 August 2012
Until June 2011, to me the word Alopecia simply meant thinning hair. Well, was I ever wrong! In June 2011, my own hair started to thin and within three weeks I had practically no head hair. At first, it was all like a bad dream. You look in the mirror and for a moment you don’t recognise the person looking back at you. Then you recognise yourself but your scalp feels different. Your head feels cold even though you know there is no reason for the cold, except of course that there are large patches on your head with no hair cover.
Within a couple of weeks I knew I had to do something and my first step was to make an appointment with a hairdresser who specialised in looking after people with hair loss. She confirmed that I had alopecia, but since the hair loss was so rapid, she organised a wig for me immediately. I walked in to the appointment with my scraggy bit of hair and I left, totally self conscious, with my new wig. It was one of those surreal moments when you really believe it will all be OK in the morning, but morning came and I had even less hair. With the wig on, few could have realised what was happening to me.
Within a few months, I had absolutely no hair on my body. Until all this happened, I never realised the importance of hair but hair has many functions including protection, regulation of body temperature, facilitation of evaporation of perspiration and also acts as sense organ. Translated into day-to-day life, the loss of hair means that you can no longer regulate your body temperature, you have to be more careful about the soaps and detergents you use and you need to consider the clothes that you wear in case they irritate the unprotected skin.
Beyond this, the condition can be quite painful. On a very cold day, you can’t imagine the pain the lack of nasal hair causes. Without eyelashes or eyebrows, a bright sunny day can be become the enemy. I love to walk, but I haven’t yet figured out how best to protect against the sun. Sun screen is an essential but as it is being absorbed, it rolls down into my eyes. There is just nothing to hold it back, away from the eye. And of course, there is a similar problem with rain and perspiration.
My journey with alopecia is relatively short. Short or not, it has been a roller coaster of emotion and an eye-opener about how many of us view others and indeed how we are viewed. The celebrity culture we’re in at the moment gives the impression that perfection and happiness come with the best clothes, flashiest car, the biggest bank account and of course, with the right hair and make-up, you’ll win the heart of your prince or princess. I never bought in to the celebrity culture, but now, when I see a glossy magazine, I wonder what’s behind our need to see all these perfect looking individuals, and wonder if our world would fall apart if imperfection and unhappiness were actually portrayed for us in the media. In fact, I think it would really help if just once in a while we read or saw some people in the news who were having a tough time too!
During the last year, I’ve spent considerable time trying to learn something about this condition. Alopecia has no known cause and no known cure. It affects men and women of all ages, backgrounds and cultures. Many believe it is stress related but this is not proven. Others suggest it is diet related, but again this is not proven. There are different levels of alopecia from thinning hair to total hair loss, and one can have partial, total or no recovery. The saying one size fits all just doesn’t apply to this condition. Who can understand why a body mistakes its own healthy hair as something bad and kills it. A tingle works its way through the body as the hair is killed, and you know that the new hair has just died. It is like a silent war taking place inside you and there is nothing to be done to bring about a ceasefire.
I can’t figure out if it s gift from nature to help us understand the complications of life. If we consider the body to be like a country, family, or institution, then it is easy to see how this kind of situation arises where silently one part of the country, family or institution attacks another part, seemingly for no reason but with serious consequences. Thinking about alopecia in this way, leads me to question if a wig is some sort of cover up, a way for me to run from the challenge that the condition might be affording me. Wearing the wig however helps me to look normal in a group and it helps others feel comfortable in my company. It hides the fact that I have no hair but it is only hiding.
Keeping up the pretence is difficult for me and the daily wearing of the wig is uncomfortable and tiresome. I just don’t like it, so I decided a couple of months ago not to bother with it as much. Since making that decision, I find I am more relaxed and more at peace. Neighbours and friends have grown used to the new me and are wonderful. Initially many thought I was undergoing chemotherapy, but since I explained, they are fantastic. Actually, I believe they are closer to me now because they see someone vulnerable and struggling just like them.
On Saturday, 4 August 2012, the family and friends of people living with alopecia will make efforts to publicise this condition and hopefully encourage the medical and social research which will help and support everyone concerned.
Paddy Pender(Download the story)
My name is Ronia Murray, I’m 17 years old, and I have Alopecia Universalis.
I doubt my story will have an impact on anyone, and mostly I’m just writing this as an outlet for myself- but I promised Liz I’d create my profile as a Teenage Friendly B*tch Page! So if you have anything to say or give out about or just want to chat (all ages are welcome!) please feel free to visit my profile or myself on Facebook!
The Start:; So anyway, I developed Alopecia at the end of October 2011. I had just come back from climbing Kilimanjaro, and since I had; never; heard of alopecia, I totally freaked the bean! I didn’t know if it was Cancer, or if I had picked up something in Africa, I had no idea. That was probably the scariest part, but for the most of it I had just ignored it, thinking it was just a little shedding of hair- like how my giant golden retriever does in the summer! It was only when I was with my little sister one day and had my hair tied up that I realised the extent of my hair loss. My sister said (and I quote) “What the hell is wrong with your hair!” I ran into the bathroom to try get a look, but obviously I couldn’t see the back of my head!; So I got her to take a picture of it, and sure enough- half of the back of my head was missing! That was when I realised this was serious. So later that night I tried to tell my mom about it- but I just burst into tears. She agreed to take me to the doctors and get sorted out, and by the time we got there it had fallen out even more. My forehead and behind my ears had gotten very thin, so the doctor took a few pictures and sent it to the dermatologist- but he was very busy and probably wouldn’t see me for a few months.
The Explanation:; My doctor was the one who thought it could have been alopecia, but she still had no idea what it was, it felt like no one was giving me answers! I was distraught and even worst of all I started to isolate myself from my friends and my boyfriend. I felt like a freak and I didn’t think they’d feel the same towards me if they knew, but eventually it had gotten so bad that I needed someone. My mom, as supportive and loving as she is! Couldn’t fill the gap my boyfriend of one year could- so I had to show him. Of course he was sympathetic and loving and said we would sort it all out, and we just recently celebrated a year and a half of being together! Just goes to show you should give more credit to the people that love you! Just because your appearance has changed slightly doesn’t mean you have!
Leaving School:; Weeks had passed, and I was losing more and more hair by the day. I was begging my mom to pull me out of school- I couldn’t handle the shame of it. Teenagers are very judgemental, and appearance is everything to them. Imagine if they knew what my appearance was turning into.
But my mom wouldn’t budge. She had no idea how traumatized I was- sure how would she when I was just pushing them all away? So she didn’t want to pull me out of school. But eventually her and my dad had a talk with me, and when they said I could stay out of school for a few months- the relief I felt shifted the whole room! We talked to my principle, and so I got to stay at home for a few months until I got my act together.
The Lift:; At this point it was just before Christmas- and my hair was falling out rapidly. So I said enough was enough. I was sick of watching my hair falling out. I wanted to start watching it all grow back. So I took a razor and shaved it all off. My loving boyfriend did the same- bless him but it was hard watching his hair grow back while mine didn’t. It continued to fall out- but not as obviously, which helped to lift my spirits. Soon enough we saw the dermatologist- who told me I had ‘Alopecia Areata’- he explained to me what it was and that my case was hereditary and linked to the fact that I have asthma and eczema. I had gotten some peace of mind, but not totally, it still wasn’t fair.
The people in my school had started to realise I hadn’t been in school for a while, and they started to ask questions- of course the rumour about me being pregnant had spread! As if I didn’t need any extra pressure! So I decided I should clue in a few of my close friends. I told them one at a time, or I got my boyfriend to tell them- and they stood by me, I couldn’t have asked for any more. The fact that they still loved me helped me to cope and not feel totally alone.
The Fall:; By now my two months was up. And I had to go back to school. I had bought a really realistic hair piece- which looked like my own real hair- except for the fact that I used to have a giant cow-lick on my forehead! So that was a noticeable difference!; The first day went fine, I was cautious, thinking people could’ve pulled it off by accident, or the wind catching it and whisking it away- but none of that happened! I really thought everyone was looking at me and it was so obvious! But eventually I realised people’s lives actually; don’t; revolved around me- they have their own issues to focus on!J; I had a few comments about my hair, how nice it was, which just made me more delighted, but slightly weary. It was only when I got home that my ‘good day’ was destroyed. My boyfriend sat me down to break the news. It’s a good thing he did or I probably would’ve fainted. Apparently word had got out- and everyone knew my hair was falling out, and that I was wearing a wig. I was the talk of the school. And the next few days where so hard. kids cramming up against the window to catch a look at the girl with the wig. I was angry at the world and hating myself. It was my own body which had done this to me- I wanted to die! to make it worse we went back to the dermatologist once I noticed the hair on my legs and my arms had gone, and that my eczema and asthma had gotten uncontrollably bad, When I told him this- he didn’t even ask to look, he didn’t even examine my arms or legs- he knew I was a lost cause. He told me it had progressed to ‘Alopecia Universalis’ and that there was 10% chance it would come back. But I only focussed on the 90% chance that it won’t. That’s not good odds for a teenager who lives in a society where looks means everything.
I was spiralling downhill, and wanting a quick and easy ‘get away free’ card, thinking back now on the thoughts that crossed my mind- I’m disgusted I even considered stooping that low- letting this disease beat me is just a ‘No-Go’.
The Beautiful New Me:; It was only for my fantastic boyfriend who saved me. If it wasn’t for the love and support I got from him and my family- I would never had made it through this.
I recently went to a support group up in Dublin- going completely natural! Walking around Ikea and Dundrum was so much easier because I didn’t need to worry if it was obvious I was wearing a wig- because I wasn’t wearing any! Hearing other Alopecian’s stories and talking to them has really helped me deal with my new look, without these wonderful new friends I’ve made- I wouldn’t be in the good place I am now.
I’m in school full time, wearing all sorts of head bands and wigs- making it quiet obvious I don’t have hair because I’m trying to phase out the wig and show the world the beautiful new me! It’s exciting because some days I can be a brunet and other days I’m jet black! I also got a really cool Henna tattoo up my neck and around my head- which has helped me to feel beautiful again. I’ve almost accepted this- I’m still having good and bad days, but doesn’t everybody.
It takes everyone time to deal with it, but it is possible- I was so close to giving up- but this site just goes to show how you are not alone. This disease is not the end of our lives; it really is just the beginning- of our new one. Our new lives in our new beautiful skin.
My name is Lorraine and at the age of thirty three I have two beautiful daughters aged three and seven both with big brown eyes and brown hair, life couldn’t be any more perfect. One evening in May 2009, I was washing my hair and discovered a patch of hair was missing and realised it’s alopecia. I knew about alopecia from my teen years as I lost a patch of my hair no bigger than a two euro coin but it grew back within the space of six months. I panicked for about an hour and said to myself it will grow back in six months at least I’m not ill. As time went on, more hair fell out slowly I tried to hide it and told nobody but inside I knew I had no control over it. I was devastated as I loved my hair, coloured it and cut it regular as to have different styles. Around a month later I noticed my youngest daughter was getting a bald patch at the crown of her head. I never thought for a second it was alopecia as the doctor had said it’s not genetic they don’t know why it happens to people there is no scientific reason as to why?
I brought my daughter to the doctor to be told yes it is alopecia but they couldn’t tell me anything else I was just added to a list to see a dermatologist in three months time. I looked for any information on the internet for weeks but there was very little support at the time and no answers. I was crying all the time so upset for my daughter her hair started to fall out rapidly every time she had a bath I would be left with handfuls of hair and tried not to let her see how upset I was. At one stage I tried calling 2FM but I couldn’t go on air as I couldn’t talk about it without crying. My own hair was falling out also at this time but I just focused on my daughter that’s how I got through the heartache, feeling of loss, guilt and being unattractive.
It had a huge effect on my eldest daughter when she saw her sister and I losing our hair she was afraid it was going to happen to her. We attended our appointment at the dermatologist to be told she had no answers and doesn’t see a case like ours regular. This didn’t give me much hope all we could do is set a meeting up to see all the leading dermatologist’s from a number of hospitals they were having their yearly get together in Crumlin Hospital. I didn’t get my hopes up as my daughter had lost all of her hair at this stage and most of mine was gone. We spent the day at the hospital while meetings were taken place to be told at the end of the day, “ It’s cosmetic you’re not ill so there is nothing we can treat” I knew they couldn’t help me.
A few more months passed I was still searching for answers on the internet and found The Hair clinic in Dublin city centre. I brought my daughter and they started laser treatment and creams. She has been using this treatment for three months now and no result as yet. I’m not using the same treatment I’m waiting to see if it works on my daughter.
I have recently found a company called,” Hairspray” which has made me really excited and has given me hope for the future. They supply many different types of hair pieces and wigs. They also were able to give me advice and it really helps to talk about it. I also found a support group called “Alopecia Ireland” they hold meetings every couple of months to keep us updated on new findings to do with alopecia. It really helps to speak with other people that have some understanding of what you have to go through and people have to deal with it in their own time. It took me a year and a half before I could really talk about it. I have now lost all of my hair and have learned to accept what’s happened and over time I hope to see improvements. I will never stop searching for answers but writing this has provided me with some sort of closure. I really felt like I was the only one having to deal with this issue but I’m now discovering many more like me!
I thought I would share my story just in case it might help someone else, who’s going through the same things as me, feel not quite so alone. I lost all my hair 5 Christmases ago. Over a 2 week period it was all gone, alopecia universalis. It wasn’t a total surprise as some winters in the past I had lost some hair on the top of my head but it always grew back in the spring.
I hid the hair loss from my husband for a week using head scarves and although I was complaining and upset, he thought I was over-reacting until I took the scarf off and he realised how bad it was. I was in Sweden at the time. My husband had gotten a job and moved there, I still lived in Ireland but travelled back and forth every two weeks to be with him in Sweden and still worked when in Ireland, my employer was very flexible which was wonderful. After a year of this I decided to move over full time to Sweden which was a much better choice as living two separate lives was very unhealthy for me and my marriage.
I went home to Ireland and went to a wig specialist and got my first two wigs, synthetic, which I thought looked great and real although much later I realised looked like wigs and not hair. I was so relieved at the time to have what little hair I had left shaved off as it was so devastating constantly seeing it falling out everywhere. getting a new wig, and I just wanted to feel “normal” again!
I then went into a mental block bubble (that’s the only way I can describe it!) where I felt nothing for a year and a half and just got on with life. I ignored the stares and double takes from people and people talking to my head, not my face and people obviously talking about me that didn’t know me, it didn’t sink in. Until, as I said, June a year and a half later. I was in my therapist’s office in Sweden and I asked her if my wig looked natural or was it obvious that I was wearing a wig. She was honest and said that it was obvious to most people, especially women as it was synthetic and looked unnatural. Big shock!; All of a sudden my world came crashing down. I went around for about 2 months like a headless chicken, mind racing about how the last year and a half was all a lie and I wasn’t normal. I looked in the mirror and the person looking back at me was a stranger, a mannequin, an alien, a freak. My sense of self was gone, who was I? My femininity was gone, my sexual appeal, my looks, my idea of who I was. That might sound very over-dramatic to most people but for others with Alopecia I think they can understand that the actual hair loss is one thing and physically dealing with that is a very difficult matter in itself but the psychological affect goes down to the core of the being and sense of self.
It was a very difficult time, that’s an understatement!; My mother was going through chemotherapy for breast cancer at the same time my hair fell out so we were bald together, ironic. ; She’s well again now, cancer free for 5 years, thank god.
I was very lucky that I was in therapy and I was able to talk through all my problems and get them off my chest. My husband could only listen to so much which I can’t blame him for and didn’t really get it and still doesn’t!; He has been so supportive in nearly every way, he kisses my head and we laugh about it and still finds me attractive, which I was so anxious about at the start. For him indoors no problem, outdoors a different issue altogether!; He was very conscious of other people’s reactions to me and when we went on holiday he asked me to hide my wigs in the wardrobe so the cleaning staff couldn’t see them. He was dealing with his own feelings about it and finding it difficult too on some levels. I was so angry and hurt. I expected, I suppose naively that everyone around me, i.e. family, would be open-armed supportive but it didn’t work out that way for me at the start. My sister was worried about her children’s reactions to me, although they looked at me for about a minute, accepted me, we had a laugh and carried on as normal. They now think I look weird with hair!; After that initial thought, my sister has been so supportive and protective of me. I felt my husband was ashamed of me in public, my mam said she knew how I felt and that we were both the same and didn’t listen to me at all when I tried to explain that her hair grew back and she always knew it would and mine wouldn’t and my best friend complained about Jade Goody’s bald picture in a magazine, that she didn’t need to see that kind of thing!; My god, not only did I have my own stuff to deal with but I felt so weighted down by everyone else’s feelings and reactions. The only person, other than my sister, that really “heard” me and understood me was my dad, he actually listened to me, which was wonderful and I am so grateful for that.
I then bought natural hair wigs which are much better and although it took 3 or 4 different wigs to get there, I finally have one that suits me, looks natural and I find comfortable, which is not an easy task.
I had an “a ha!” moment one day in the gym in Sweden. I made myself take off my natural hair wig in the changing room and put on a synthetic one in front of everyone in the room. It’s much easier to work out in a synthetic wig as you sweat so much and it’s easier to wash more often. The natural one can’t be washed as often so I never wear that in the gym. There were three teenage girls in the room at the time and when I went outside to work out, I saw them pointing at me, speaking in Swedish, to some guys, about me and I just lost it. I went into a toilet and cried my eyes out for about 10 minutes. I looked in the mirror and said “Right, that’s it! Either you can be a victim all your life or you can accept this and get on with your life!”
Something clicked in me and from that moment on my life and perception changed. I took off my wig without any problems, if people looked at me, I said hello, which automatically they had to say back which diffused things. When I went on holidays I took my wig off to work out in the gym as it was so hot and it’s amazing that if your behaviour is normal, then most everyone else’s is too, they accept it. People talked to me without hesitation and in some strange way maybe I was more approachable without hair!; It was so liberating for me and I keep challenging myself every now and then to go a little bit further and be more open.
I decided not to deflect questions and to avoid the “elephant in the room” syndrome and tell people upfront my situation and people really seemed to appreciate the honesty. It’s a part of me but it’s not all of me. As my therapist said, “think of yourself as a lady who is bald that wears wigs because they make you feel nice”.
Over time as I was more open and accepting of my situation, my family’s feelings changed to match mine and my husband doesn’t have any issues now with me in public, I think he was picking up on my insecurities as well as his own but when I chilled out, he did too!
I could go on and on about all the little situations that have happened that have crushed me, annoyed me, made me laugh but maybe when I can get to a support meeting, which is difficult at the moment because I am currently living in Chile!, I will share them then.
I think the main message I want to convey is that although it was and is one of the hardest and upsetting things I’ve gone through, it has made me so strong and self-reliant. I found my inner strength, I have found my sense of self, I have a better understanding of other people’s all manner of woe’s, I’m less superficial and actually happier in myself than I was before I lost the hair. The no waxing and the wash and go showering are great!; I would love my eyelashes back though!
Thanks for reading my story and hope to meet all our members when I can get back to Ireland.
Diary of an Alopecian
My name is Hayley. I’m 26 and I suffer from alopecia. This is my story.
Early April this year I was sitting watching TV. I always remember it was early afternoon, because Loose Women was on. I was playing with my hair and felt something weird on my scalp, rubbing it. I was thinking what wtf!!! looked in the mirror and there to my horror was a bald patch the size of a 10p coin. I am not sure how long I sat there looking at it, maybe a minute… then I cried. My first thought was phone my mum. I phoned her and she came straight over to my house. At this point alopecia hadn’t even crossed my mind. I’d heard of alopecia of course, but didn’t think that was what I had. I made my mum sit for about 20 mins checking my hair for more bald patches which she never found. What she said to me was ‘Hayley u have alopecia’ my reply was ‘don’t be ridiculous people with alopecia have no hair’ (how naive I was) at that comment my mum Googled alopecia and then I read it and cried….and cried and cried and cried. I think I cried myself to sleep that night.
The following day I phoned the doctor at 8.30 to get an emergency appointment. 10.20 was my appointment, never forget it cause I remember sitting in the waiting room with my mum and looking at the time, it was 10.30 and I was thinking I’m going to miss This Morning. My mum was moaning about how doctors always run late but I was not bothered, think it was almost 11 when my name was called and I walked into the doctor’s room and sat down and here in front of me was this 40 odd doctor with his legs crossed and said what can I do for you. I tried to speak and then came the tears…followed by more tears, my mum spoke for me and his words were with all disrespect I am the doctor and I think I should be the one making the diagnosis. When I was able to speak I asked to be referred to a dermatologist which he said was not necessary as the size of my patch wouldn’t get any bigger. He advised me to have blood tests taken. I walked out the surgery feeling awful and wished I hadn’t bothered.
Over the next few weeks I was very aware of what I done with my hair, I didn’t dare tie it up in a tight ponytail, I brushed it when it needed it but then I found another patch…maybe 3 weeks after I found the first one. I was baffled, there was no hair on my bed covers, in the bath, the hair brush…where did it go??; That night I went to my mums and got her to check my hair, that’s when she found 3 more patches, small yes but I had 5 patches?? devastated?? gutted?? couldn’t put into words how I felt. if I’m honest those next few weeks were a total blur to me, my head was elsewhere.
It was after I sorted my head out I started noticing my hair everywhere, my blonde hair and black bed covers was a dead give away, by then I’d stopped looking at my patches but I decided I’d have a look…..2 mirrors looking at the back of my head…what a mess!!! that was my first proper breakdown, I had more patches than I did hair. I phoned my friend and said I need u here, she came over, saw the state I was in and phoned the doctors demanding an appointment. the only appointment they had that day was with Dr Barnes…..great!! so there I went back into him and he had a go at me cause I didn’t get my bloods done, he then goes on to tell me he will not refer me to a dermatologist as I have still got hair there, and one of my patches are growing back. smack him over the face?? I bloody wish I had, nothing less than he deserves. That night I was home alone and I was thinking to myself why are u doing this to yourself, it’s all falling out anyway, why let nature do it when u can do it urself, so I tied what little I had left into a ponytail and I cut it off!
I then run myself a bath, put the mirror behind the taps, covered my head in shaving foam and shaved. It was the first time I laughed in weeks cause looking back at me in the mirror was my dad!! In all of my 26 years it took shaving my hair off to realise I was the image of my father!! I came out the bath, upset of course but for some strange reason I felt relief. Relieved I didn’t have to sit and count the hairs falling out anymore, relieved I didn’t have to think to myself everyday when will this end, when will it just either all fall out or all start growing back.
I put my jammies on, poured myself a glass of wine and sat down and started thinking and one of my first thoughts was SHIT how can I go out tomorrow, I have no hair and I have no wig. that was the moment I regretted what I had done, sitting here in my hand is my long (very thin) blonde ponytail, bobble intact that an hour earlier I had chopped off. Strangely enough though I was still very calm, I didn’t cry, not once. I just phoned my mum, told her what I had done and said what do I do now. Very kindly my mum offered to pay for a wig for me, so I had an early night and woke up early googling every wig shop in Edinburgh. I phoned round and one shop had an appointment that day so me and my mum headed through to Edinburgh. ;
I must add that I must have looked a sight with the sun shining and me with a wooly hat and my hood up!!; We arrived at the shop and from the moment we walked through that door we were treated with so much respect. I was introduced to Aimee who was going to be looking after me. Me and my mum were escorted into a little room and Aimee came in and chatted to us for a while. She asked me what type of style, colour, cut I was looking for. In all honesty I had no idea!!; she went away and came back about 5 mins later with boxes full of wigs. this is when it hit me, when she was standing in front me holding up a wig. I broke down there and then and there was no stopping the tears. Aimee was lovely, you could tell she felt rather awkward but what little she said to me helped. She said I understand this isn’t easy but it has to be done so let’s make some fun out of it. And there she whipped out a long jet black wig (imagine Mortisha from Adams Family), and put it on her head and I laughed!!;It definitely eased the moment. From there I tried on different colours, styles, lengths and in the end I opted for a blonde wig, just past my shoulder. Very similar to what I had before. I left the shop feeling on top of the world and the happiest I’d felt for a while.
The next few weeks went good, that was until I went to a gig one night and in the toilets a girl came up to me, in earshot of everyone and said to me ‘I’m a hairdresser so I can tell that’s a wig’. I couldn’t believe she said it in front of everyone, I was mortified. But instead of showing her I wanted the ground to swallow up. I said that’s right my wig is all bought and paid for and I walked off. I felt proud of myself but sooooo annoyed that she just came out and said that. My worst experience was when I went to Newcastle with a friend. I was wearing a little funky outfit which went well with my little sparkly hat. We were in a pub, a little bit tipsy and got chatting to a group of rowdy lads. We were having a great time until one of the lads decided to take my hat off……and the wig went with it. The 2 seconds that I just stared at him felt like 2 minutes. what did I do?? I ran for the nearest exit which ended up the fire exit.
So here I am standing outside the back of a pub crying my eyes out with no wig or hat. About a minute later one of the other lads came out was very sweet and apologised for his friend, at this point I was livid. I wanted to go back in and smack him, what right did he have to take my hat off. I managed to get a bit courage in me, and walk back in that pub. The boy who took my hat off had gone. What was left was a note in my bag which said I’m so, so sorry. he obviously felt that guilty he left the pub, I’d have preferred him to have stayed and apologised but I got a sorry all the same. My confidence has never been the same since that day though. It made me very ‘aware’ that I wore a wig and I won’t sit in a pub or restaurant with people behind me. I have to sit with my back to a wall so I can see everyone.
Last week I decided I couldn’t put my blood tests off any longer, they had to be done. I went back on Friday to get my results and seen a lovely female doctor. My blood results came back normal, anyone else would be happy but I was so disappointed. I thought these blood tests were going to answer all my questions. Why did I get Alopecia but all they told me is that I’m healthy. I didn’t wish myself to have something wrong with me, I just wanted something to come back and tell me why this happened to me. The doctor has referred me to a dermatologist (finally) and also put urgency on the referral. So hopefully I won’t wait too long for an appointment, get myself some answers maybe and of course a new wig (courtesy of the NHS Bank Account of course!!)
Hi Everyone! I just thought I would add my story to the site. Well I am 24yrs old and have had alopecia for nearly 4 years now. Back in March 2004, I was diagnosed with Acute Myeloid Leukaemia. In order to treat it, I received a Bone Marrow Transplant from my sister. I had a lot of chemotherapy and as we all know, a side effect from chemo is hair loss. I lost my hair just before my transplant, thinking it would obviously grow back. But about 3 months after my transplant, my hair was very slow to come back. Doctors then told me that my hair may never come back. I was devastated! I couldn’t believe it. It was like a nightmare, especially for a girl of 20yrs old!I have been wearing a wig since summer 2005. Not because I want to but because I feel like I have to. Wigs are not comfortable at all. I always know it’s on my head and I never forget I am wearing one. If I had the courage and the confidence to get up in the morning and not put on my wig and just go out, I would! But until that day I am stuck wearing them. So far, well up until about 4 weeks ago, wearing a wig had gone ok. Never been too noticeable, never came between me and my partner or never fallen off in public! Well like I said, until 4 weeks ago! My first experience of being bald in public happened 4 weeks ago in a night club, of all places. I was out with my boyfriend when somebody accidentally pulled my hair, not remembering that I wear a wig. That night, for some reason, I did not stick my hair on with tape. I have gone out without doing it before and nothing had ever happened. But not that night! I was standing in the middle of the night club bald, for what seemed like forever!! I was in complete shock. I was holding my wig in my hands and just couldn’t believe it. I eventually ran to the bathroom, shocked and frightened. Why I was frightened I don’t know. I out my wig back on and got the courage to go back out to my boyfriend. He was so supportive. He tried to convince me that nobody seen it, but you would want to be blind not to see it. It was very difficult but I did not want to give and go home. I had spoken about going bald for ages but obviously not in that way.
When I got home that night I couldn’t stop crying. I was in shock and could not believe it had happened. I look back on it now and I laugh. It was bound to happen. And in a way I am glad it happened. At least next time it won’t be as much of a shock and I might laugh it off next time!
Since then I have been a bit more relaxed about my hair. I talk about my alopecia more openly, with people who don’t know. I feel it helps and gives me some control over my hair loss. I have enjoyed getting involved with Liz and the group. And the support I receive from everyone at the group meetings. I really enjoy going to the groups and I feel without them I would not be as open about my alopecia as I am.
So finally, I would like to personally thank Liz and the support group! You have all helped me in more ways than you know! xxxxx
16 Year Old Male's Story
21st October 2010
Just to say I have had alopecia since I was ten. I am now sixteen, lost my hair, eyebrows and eyelashes, have worn a hat for the last six years. Wanted to say very proud of what you have done saw you, I saw you on YouTube interview, I am still coming to terms with it myself.
I am on a new treatment that was tried on six people in France that helped their hair grow back, I will let you know the medication I am on its a lot so after my next appointment I will email you. I am the first person in Uk to be trying this so will let you know how I get on.
I just wanted to let you know that I really admire you for showing your true colours and I look up to you.
Liz Shiel’s Story (Founder)
My name is Liz Shiel. I live in Athlone and I am 47 years old. Four years ago I founded Alopecia Support Ireland. In 1998 I started getting small round bald patches all over my head I received various amounts of different treatments but to no avail. In January 2000 all my hair finally fell out, by March 2000 I had no body hair left. This condition is called Alopecia Universalis. I have a strong personality and I truly believe that because of this I am able to cope in dealing with Alopecia. In the last three years I have started wearing wigs and now even find it fun changing hairstyles, although I can empathize with anyone who finds it difficult to deal with this condition as I did all those years ago. For this reason I decided to found a website, helpline and support group dedicated to anyone who might suffer or is in contact with someone who suffers from Alopecia. Suffering from this condition is a very personal thing obviously externally but just as serious internally. Facing people everyday when your hair first starts to fall out is very difficult and equally as difficult to admit. I am hoping with the anonymity of the support line and website that sufferers will feel free and safe to express their feelings. I am hopeful that I will be successful in setting up some support groups throughout the Country and raising awareness of this awful emotional and physical and widely misunderstood condition.
On Being A Parent
My Courageous Daughter Caitlin (By Caroline Kehoe), Wexford, Ireland
My daughter has had a permanent form of hair loss called hypotrichosis; since she was a small baby and I would like to introduce her to you. Her name is Caitlin Ellen Kehoe. and this is her story.
In 2004 we brought home our beautiful baby girl Caitlin. She had jet black hair , big eyes and sallow skin. Caitlin’s hair began to fall out almost straight away and by the age of six weeks she was totally bald. We weren’t at all concerned as most babies lose their hair but when it hadn’t grown back by her first birthday people began to comment on her baldness. We had never heard of alopecia areata, so the doctors did lots of tests for other diseases and possible reasons for her condition. A paediatrician in our local hospital thought it might be a very serious illness called ectodermal dysphasia and this scared the life out of us as it would mean our perfect little girl would have developmental and mental problems. We spent months crying every day until we had our consultation with the head dermatologist in Ireland – Dr. Alan Irvine, who told us it definitely was not ectodermal dysplasis and that other than having no hair on her scalp, Caitlin would be perfectly healthy in every other way. It was actually a massive relief to hear it was a permanent form of alopecia. After they finally diagnosed alopecia, we learned there was no known cure. At the same time, we found out the disease would not disable her in any physical way.
We didn’t know how we would help her cope emotionally. So we focused on just what the doctor said — that she could do anything in life that she would like to do. We decided not to treat her differently or make her feel embarrassed or challenged by her condition. In her presence, we told our family and friends that, while Caitlin might never have her own hair again, she could become anything in life that she chose to become; she could go to school and grow up to be a happy, healthy young woman.
That was when my search for wigs and support began and I have to say it was a very lonely and isolating journey. I quickly realised that there was very few options available in Ireland at that time and even less options for children with hair loss. I spent hours and hours in front of the computer every night researching wig caps and hair types and trying to find another family in the same boat. I longed to talk to another mum in the same situation but there was no support groups at that time like there is now. As parents we felt very alone and had no where to turn for support.
The lowest point for us was when she was aged 2-3 as people would stare at her as we walked down the street. Some with pity in their eyes as they assumed she was sick with cancer and others stared at her as if she was an alien and nudged their friends to look. I spent my time searching peoples eyes to see how they were reacting to my little girls lack of hair and it began to eat me up inside. I had a constant knot in my stomach every time we went outside and I felt so powerless as I couldn’t protect my baby from peoples ignorance.
Caitlin got her first wig (a dermalite) when she was 3 years old and it really suited her and she got used to wearing it straight away. Shaving off the few strands of hair that she had proved to be a very upsetting experience and I grieved for the hair she would never have. Children’s heads grow very quickly so we had to order a second dermalite wig after a few months and this arrived a few months later. They are custom made to fit the Childs head perfectly and are made using European quality human hair and cost about one thousand Euro. We were so happy with the first one that it never crossed our minds that the second one would be any different. The second wig was ill fitting, frizzy, bushy and dry. I burst into tears when I saw it at the wig salon. Even more upsetting was the reaction of the owner of the salon who specialised in wigs for necessity wearers !! I was told that Caitlin’s head must have changed!! Baring in mind that the wig was far too big for her I explained that her head couldn’t have shrunk !! I was in a state as Caitlin was due to start big school in a few weeks time and these wigs take about 4 months to make. It was then we were brought down to a local clothes alterations shop where the woman who owned the wig salon took the wig off Caitlin’s head and asked the lady at the sewing machine to sew a seam in it to make it smaller !! I was in such shock that I didn’t even stop this happening to my little girl as she stood there humiliated in front of strangers. Needless to say the wig was still of no use to Caitlin and we were told by the wig salon that they wouldn’t be dealing with children for dermalite wigs anymore and off we had to go home. I couldn’t stop crying and didn’t know what to do. I had to report the wig shop to the HSE to get a refund which we eventually received with a snotty letter. Its an experience that should never of happened and I hope it never happens to anyone else.
Thankfully I happened to find a representative in Dublin (Audrey O Hara of Freedom wigs) for a special type of suction wig that are custom made using a silicone base and excellent quality human hair in New Zealand. A plaster mould was made of Caitlin’s head and this was sent off to New Zealand and four months later a fabulous suction wig arrived in Ireland for Caitlin. That day our stress melted away. I’ve never seen any wig so realistic. The scalp of the entire wig is tinted to match her skin colour and she could wear her hair up or down. Caitlin never had to worry about her hair falling off as the suction is secure and can only be removed by inserting a finger to break the seal. Caitlin can swim, tumble, do gymnastics, you name it ! , in her wig.
She became active in many school and after school activities and programs. She has always amazed me by being confident and happy in her own skin. She . Her friends not only accepted her, but never treated her any differently.
But you know, there are always those who like to hurt others to get attention. And where Caitlin’s hair loss was concerned, they made no exception. One day in school a boy in her class pulled off her bandana that she sometimes chose to wear and laughed at her. I had not gotten a call, so I didn’t know anything. Later that evening she told me that she was upset, not that everyone had seen her without a head covering, but because the boy had taken the choice of when to show her head away from her.
Caitlin has since moved school for logistical reasons and we educated each class on alopecia by showing them a; DVD entitled “alopecia-why my hair falls out“, I did a talk with the kids in each class and the response was fantastic. Knowledge is power and if children understand what alopecia is they tend not to tease or make hurtful remarks, In fact they are supportive and caring and treat her like any other child. We also sent a letter the parents of each student explaining to them about Caitlin’s condition and asking for their support in educating their children about it. Caitlin wrote a; lovely little note with photos of her with and without her wig to each student in her class which we posted the week before she started in the school
She described her condition and how and when her hair loss happened, and she explained that alopecia areata is not like cancer, that she can do anything anyone with hair can do. She said that the only time her condition hurt was when people talked about her, instead of to her. She said, “If you want to know why I don’t have hair, just ask me, then let’s get on with other things.”
She also said “This is me, but it’s not all of me. I am many other things too. I’m also a happy person and I like learning new things and being with my friends, just like all of you. But you won’t know that if you only look at me and think about the loss of my hair.”
I believe it’s important for parents Caitlin has not had a problem in school again. She has made a lot of friends, and a lot of young people have learned about alopecia areata and its limited effect on a productive life.
We have met so many wonderful people through the help of Liz Sheil , the founder of Alopecia support Ireland and have a wonderful network of support. We go to the children’s alopecia camp run by BeBold.org in the UK every summer and Caitlin has made many new friends with alopecia.
Over the years I watched her; gain self confidence. She has; appeared in the local newspaper and on TV as a spokesperson for people with alopecia areata. ; I’m so proud of her. She has come; a long way in dealing with not having hair .I believe it’s important for parents to feel that their child is; okay just the way he or she is, hair or no hair. Children’s opinions of themselves are shaped by how they think their parents feel about them. If parents even hint that their child is damaged or is not quite the way he or she should be, the child will adopt these same feelings. Everyone is unique, different from one another in some way. To feel that everything would be okay (or better) if only the hair would grow back sets up a possibility for long- term disappointment. If the hair grows back, it’s wonderful, but you never know if it might fall out again. To count on something so unpredictable for self-esteem could be damaging. I suggest finding (or starting) a local support group and
attending with your child. We have attended support groups and summer camps. It was meaningful for Caitlin; to meet other people with alopecia areata, mostly adults, but also children, carrying on normal lives.
Today, Caitlin is a healthy; 7 year old, a beautiful, strong, confident little girl who had the courage to take her wig off on national TV as she talked about alopecia to help others with the condition.
She is a very loving child, who is loved and respected by her friends, her family, and classmates. She made me laugh the other day when she said “God made only a few perfect heads…..and the rest he covered with hair!!”
I hope this story helps other young people see that their life is all up to them, as it should be.
Alopecia areata doesn’t have to change a thing, if you don’t want it to.