Real Life Alopecia Story: Meet Ben

In case you haven't guessed yet, I am a bit of a fan of Twitter and as well as using it to keep up to date, I also connect with quite a lot of people through it. (If you want to connect, you can find me here @PrettyBald) Anyway, the person that I connected with this week is a lovely young chap called Ben; Ben is 18 years old and has alopecia. He is keen to raise awareness of the condition, and asked us to include his story, as well as offering regular contributions to the blog with male insights to the condition. Without further ado, here is Ben's story...

I am lucky really. This may sound odd but it's true. My name is Ben from South East England in the UK! I'm 18 and have been bald for six months due to alopecia. Usually you wouldn't associate that with being lucky but I am looking past that.

My story starts when I was 14, I had my first bald patch at the back of my head - about the size of Apple at its largest... I was fine with it, it didn't really bother me as it was small and I assumed it was temporary. Soon enough, maybe after six months it disappeared. Around a year and a half later, the same patch came back; I wasn't alarmed, just a little irritated. I assumed it would disappear soon enough. The patch got bigger and remained for a year; fortunately it was in the right place so I could grow the hair above long enough to hide it. I wasn't ashamed of it, I showed people because I thought it was a bit different and ‘no biggy'.

When I was 17, it began to annoy me more and more. I wasn't embarrassed but it was very frustrating to think it wasn't getting better! I couldn't have the haircut I wanted (not really a huge issue in perspective but at the time, horrible). As my AS level exams approached, my condition was developing... Two small spots appeared either side of the crown of my head; both about the size of a grape; again not a huge deal but I was more self conscious about these ones. My hair was long enough to hide them but the effort to cover them grew also.

Ben at 17

In April 2014, my two little spots began to grow as well as my big one at the back.... I was managing to cover them still. My exams passed and in June I was still able to hide them with much struggle and despair. I was really getting to the end of my tether with it all - I kept snapping at family members who just wanted to help, which now I feel extremely guilty for.

During this time I saw many doctors, specialists and sought homeopathic practices to help determine the cause / perhaps find a cure for my problem. A trichologist offered me hair spray with a dark brown 'paint' element which helped conceal my bald patches further... I was much more relaxed about it when I found this "solution". Many people still didn't realise how bad my situation was because, with great help from my mother, I managed to keep them hidden. Besides this, I tried many steroid creams and circulation boosting ointments to attempt to stimulate hair growth but nothing seemed to work.

A key event within all this was meeting my first girlfriend in June last year... I was very happy to be with her but I was constantly concerned about her finding out. Furthermore, the dye in my hairspray used to come off on fabric, so I was forever worried about staining her furniture. I one day decided to be open with her and talk about it, she said she noticed (how could she not) and was supportive about it. Again this made more relaxed about it and still I was optimistic that re-growth could occur.

Between July and September 2014, my hair loss was at its fastest acceleration. My two patches on the top of my head became three and the large bottom one grew further... I was panicking; “they'll all get bigger and form one big one, I know it” I said. This was my biggest fear… but I didn't think it would happen so quickly. It got to the point in late July when my three top patches merged - I couldn't cover the mass patch without looking sillier than I already did. I looked like a monk... hair around a large bald circle at the crown of my head. I hated it, I wore a hat most of the time.

Between September and October, my large 'monk' circle grew larger and I rarely had it exposed apart from being at home. I wore a wooly hat most of the time and just exposed my fringe to create the impression I had 'normal' hair. I remember going to my first concert wearing a thick wooly hat in fear of ridicule; I was so hot, it was dreadful but my embarrassment kept it on.

In early October, I thought “you know what, no one cares!!”- I made the decision to not wear a hat all the time. It was a big one for me as I stood out quite a lot, it was very odd looking but luckily my school community was very supportive and I received literally zero ridicule for it. In the same month, I noticed at the front of my hair line, two small bald patches were starting to form... At this point I was still in denial that full baldness was coming, I still believed it was going to grow back.

My hair was then coming out every time I brushed my hand through it, every time I had a shower I could see it on the floor... I now had a total of four bald patches. The two large ones then connected and then I developed one above each ear. I knew it was coming.

Early November hit and I had about 50% of my hair, on the 10th of November I went to have a haircut; I went to a proper hair salon (I started using them as they were good at doing haircuts that helped hide my patches) and I told my hairdresser to do her usual. She showed me what it looked like after she finished, my heart sank... I thought I looked horrible! The bald patches were clearly visible at all angles. “Is that okay for you?” she asked… I had tears in my eyes… I knew it was time to let it go. I told her to shave it off, “I think it will look better”. I watched her in the mirror perhaps shave off the remaining 40%/50% of hair. My mum was by my side helping me through and trying not to get upset herself.

Ben at the hairdresser - visible alopecia hairloss

This decision was key for me, I wanted to beat alopecia, not let it beat me. I was in control, I was the one who made the decision to go bald first. Screw alopecia, it didn’t own me… I owned it.

Ben pot-haircut; owning his alopecia

Getting it shaved off was a difficult decision but one I am pleased I made; it was difficult and the hardest part was coming home to my unsuspecting father and brother… I felt so nervous about their reaction. Needless to say, it was met with support and emotion. Additionally, I was concerned about my girlfriend’s reaction; “Will she still like me?” was the biggest question running through my mind. She reacted in a way to be expected - shock. But she was extremely supportive and stood by me which I hold deep admiration for. The day after I shaved my head was interesting… I haven’t mentioned this previously but I was the Head Boy for my school and therefore had to make many speeches and attend ceremonies in my last year of school.

The day after I shaved my head, I had to lay wreaths in front of the entire school at our WW2 memorials. This was, accidentally, my ‘big reveal’… I didn’t even think about it the day before BUT in a way it was extremely liberating to reveal my ‘new look’ to my entire school community at once. In my opinion, looking back, this was the best way to do it.

Since then, my hair has continued to fall out, I shaved it regularly to keep my existing hair short but in Feb 2015, I didn’t need to anymore… I've lost 100% of my scalp hair now.

Ben with nearly 100% scalp hairloss

Alongside this in the last six months I have lost much of my other body hair and various patches are missing around my body. Finally, in the last two months, what has concerned me the most is the gradual disappearance of my eyebrow hair… Both of them are at least half as thick as they were - which is extremely bothering for me as it is the next level of the condition really.

Thinning eyebrows - the worry of many with alopecia!

In the last 2 weeks I have become psychologically, much better. I have decided that it shouldn't bother me, that I should embrace it and strive to help others. This condition is a part of what makes me, me.

I am lucky because I still have a loving family, I still have a roof over my head and food at an arms reach. I still have good health in other aspects (at least my condition isn't life threatening). I still have friends and most importantly, I am still me.

Alopecia doesn’t define you, you define alopecia.

Thank you to Ben for sharing his story and watch out for other posts from him in the near future! If you enjoyed reading that, then why not check out this post about shaving.

Don't forget, if you want to become a PrettyBald blogger, we'd love to have you on board. Alternatively, you can send us your story to share with our followers, to help provide support and generate awareness too!

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald

Hairloss treatment scams... How to spot them!

If you've been keeping up with the blog recently, you may have spotted my outrage at a hairloss advert that promised six times faster hair growth than normal. You may also have spotted Trichologist Mark Blake's comment labelling claims like these 'Pure Fantasy'. So, how can you protect yourself against common scams that seem oh so convincing, yet can leave you disheartened, out of pocket and potentially even in ill health?

As you can imagine, there is no hard and fast rule that will 100% highlight a scam, but I've compiled a general checklist that you can compare them against, and use as a guide to make your decision...

1. Don't get drawn in... first and foremost, don't get drawn in by the words they use. Any advert hoping to gain money on at best vague promises will use tempting words that hope to draw you in. Take a step back and look at what they are actually promising, not what they are writing - is it faster hair growth or stimulation, healthier locks or damage repair. A lot (but not all) supplements will have some basis in truth and may well help in some cases, but they aren't miracle workers, so the promises have to at least be realistic, and you have to be sure it is what you want and need. 
2. Is it realistic...? Whilst hairloss still has some medical mysteries, there are some agreed facts and triggers, even if it isn't fully understood. There are also a set number of treatments which are medically approved and clinically recommended and only these will have some likelihood of helping significantly reduce or reverse hairloss. Anything else is likely at best to have minor benefits, if they can help at all. If in doubt, you can also ask a Doctor or Clinician about the claims, but it should be fairly obvious if they are overselling the product. 
3. Has it been in the News? A cure for hairloss would be worth billions on the market, whether as an over-the-counter product or a prescription only medicine, a pharmaceutical company would LOVE to bring it to market. If it hasn't been in the news (on a credible website) at some point, then it is likely that any big claims will be grossly overstated.
4. Look for the obvious... Is it spelled correctly? Does it make sense? Don't get me wrong, spelling isn't everyone's forte and we won't all be perfect (I myself have spotted a few typos on this blog), but things should be spelled correctly most of the way through. Obvious errors can give an indication that the company is less than professional. You should also take the product name and Google it - it should pop up multiple times and have the same sort of promises, written in lots of different ways.
5. Are there reviews? Reviews can be hugely beneficial to determine whether a product may work, but they are also opinion based. First, make sure the review is from someone you trust - a friend, a blog you follow and have tried something from before, someone else in the same position as you etc. It should be independent though and not on the first blog / article / resource that you come across, because they can of course be faked too! It's also worth noting that unless a photo is time-stamped from the camera, time between photos can be adjusted to suggest better or faster results than actually exist.   
6. Is it clinically tested? This is probably the single most important one... Is a product clinically and independently tested? Whilst a plant extract that *may* promote glossy hair won't need to be clinically tested, it equally won't have significant benefits either. If a product promises full regrowth or six times faster growth, then it will need clinical testing and it will have scientifically proven results and probably a write-up in a medical journal too. This is the case with the JAKs inhibitors which had much media attention at the end of last year, and which have yet to be fully researched let alone released on the market.   

At the end of the day, if it sounds too good to be true, it probably is, and if it promises instant regrowth, it probably won't! Much as you would like the promises to be true, just remember, if you buy in and it doesn't deliver, you'll be left feeling totally disappointed.

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald

The significance of hair...

As you might have spotted in this blog post about alopecia, and this one about my own hairloss, I've had some very diverse experiences with Trichologists, and whilst they can't cure all forms of hairloss, they do really understand it, and know what's going on...

A few weeks ago, I started tweeting with Iain Sallis, a trichologist with a particular fascination for the psychological impacts of hairloss, and he certainly has some interesting things to say. Here he kindly guest blog's for us here at Pretty Bald, giving insight into his own experiences with patients that he's met along the way... Enjoy!

“So what! You're not going to die from going bald or loosing a bit of hair...so why are you worrying! It's not life threatening”

These types of statements are all too common if you speak to some misguided (and lets face it ignorant) people about hair loss; the medical profession has a tendency to dismiss hair problems as frivolous or people having a ‘slight case of vanity’. This, coupled with the socially awkward problem of talking to someone about it in the first place can leave sufferers upset, vulnerable and confused as to their problem.

As a Trichologist my job is to help people with hair loss and scalp problems; I see the devastation it can cause in a person's life almost daily and it always amazes me how attached people are to this dead fibre that serves no physical purpose to our lives! More so than our nails or skin, our hair seems to have become a manifestation of our psychological well being. People know how important hair is to them (especially if they have suffered hair loss or thinning) I just think people do not realise why hair is so important to us socially and psychologically.

The importance of hair is ingrained into our history and our psyche from us being little... just think of stories such as Rapunzel, Samson and Dahlia, these stories teach us that beautiful princesses have beautiful hair, and a man with a full head of hair denotes strength and power (much like a mane of a lion). Through the ages ‘hair’ has denoted social standing:

• It told us who the warriors are in a tribe (the Mohawk) or who we should be ashamed of; socially the cutting off of a woman’s hair used to be a punishment for promiscuity in some parts of the world until the mid 1900s... of course the men never had their hair cut, just the women!
• Even the colour of hair has a large affect on us; red hair used to be the sign of a fiery temper, blondes are supposed to have more fun but may also be seen to infer a person to be dizzy or dim? 
• Many women (and men) change their hair colour and cut when something significant has happened in their lives; it is a signal to them and everyone else that says I have changed or moved on...I’m a new person!
• Grey hair is now seen as a sign of ageing, however, when we were more of a tribal animal, grey hair may have been a rarity (as we would not live for very long) so grey hair would denote the seniority and wisdom that would come with being around for so long! Again a positive unfortunately turned into a negative.

The lack of knowledge of hair disorders makes for very frustrated and worried people who quite easily fall into the hands of companies who tout their ‘miracle cures’ at a great cost (both emotionally and financially) to the sufferer. Hair loss on its own is not life threatening, but in many cases it acts as a ‘red flag’ to an underlying problem that need to be addressed. The psychological effects of losing your hair usually far outweigh the physical effects though!

• Men - Usually feel as though they cannot talk to friends or family about hair loss as they shouldn't be bothered about it...just one of those things, right? If you’re worried about your hair, you’re classed as vain and it’s definitely not masculine to be worrying about your hair (the average bloke down the pub will have little sympathy with a mate who starts talking about his worried hair line).
• Women – To admit that you're losing your hair can subconsciously feel like you're losing your femininity, youth, looks and in turn your self confidence...not exactly the easiest subject to bring up with friends or family!

We live in a world where perfection is rammed down our throats through every media, magazines, T.V and Films. This only serves to isolate the person with a hair problem as you very rarely see women suffer with hair problems in the media (unless they’re unfortunate enough to suffer from it in whilst the glare of the media spot light, and be strong enough to confront the problem in the full glare of the supportive but fascinated media). The common disguise is hair extensions, which can mask thinning and fine hair, but which can also lead to exacerbating the very same issues they are trying to cover. Hence every now and again you will see a drastic hair change as the hair would have got so bad it cannot hack it any more…fortunately for them, they also have a army of stylists to cover the problem in a different way!

With men the last resort is the shaved look, frowned upon until the past couple of decades, but thanks to celebrities such as David Beckham this look hit the mainstream and all of a sudden a shaved head is cool…not strange; a guy who shaved his head before this were looked upon as a thug (a bovver boy). When I was growing up the only bald guys on TV were Kojak and Yule Brynner (and Duncan Goodhew of course!) all of which stood out due to their complete lack of scalp hair. Other follicularly challenged men such as Bruce Willis decided to go down the toupè route until he decided to shave his head too…then he became hot property again?!

A New scientific study show that men and women who tried to hide a hair problem were rated, less confident and less attractive by a survey group, whereas people with a shaved / bald head were rated more confident and so more attractive; why? The scientists behind this social experiment concluded that the survey group subconsciously realised the subjects in the first group were trying to hide something, which then transferred to a lack of confidence in the person's mind. The group who did not show the tendencies to hide, were rated more confident…hence more attractive!

For women, the cultural change of “fashionable baldness’ has not taken place as hair and ‘beauty’ are far more intertwined in the female psyche than the male!

Take all of the above then focus it through the lens of medial consumption, the obsession with ‘whoever’s’ new hair cut, colour, style…we are consumers and we CONSUME our idols, celebrities (for want of a better word)...They are not allowed a ‘bad hair day’ therefore, (sub-consciously) neither are you!

It’s only when our conscious brain takes over, which argues the fact that “you are not your hair”, you can be feminine, beautiful and worthy WITHOUT this strange ‘dead’ fibre growing out of your scalp that you can place hair loss into perspective….so why does it still niggle you, prick the back of your mind??

I have been told that our subconscious is not logical; it is there to keep us alive, so, if in the past the females that ‘looked’ healthy (i.e.: fit, good skin, healthy hair etc) made our brains think they would make good mates, they henceforth had a better chance of perpetuating our species…this may be the reason why we ‘feel’ hair is important, the same way good teeth and good skin are, as a marker of ‘health’.

So, how important is hair really? Well, in truth the answer is “it is as important as you make it”  as the lack of hair has no significant health implications. Hair is all important to our psychological health and well being, so what happens when you have to learn to live without it, to re-program your brain to let go of this superfluous fibre!...maybe you can tell me?

Iain Sallis M.I.T A.I.T

www.hairmedic.co.uk

www.prettybald.co.uk Twitter: @PrettyBald