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Guest Post – Hayes Family

If we are talking about positives that go with alopecia, it’s meeting some of the most amazing people world wide via social media. The Hayes Family are some of those people.  Mum Ashley, Dad Zach and daughter Malia, come from America and make YouTube videos primarily to promote alopecia awareness because their beautiful daughter has alopecia. I have loved watching their videos (partly because they are also Disney super fans and that makes me happy) and admire the way they are so open and honest about how alopecia affects their family from a parents point of view and from a child’s perspective.

So, I reached out to them and asked if they’d like to guest blog about their experiences and they said yes! So here you go, a guest blog post from the amazing Hayes family. Please go follow them on their social media and subscribe to their YouTube channel:

YouTube: @hayesfamilyvlog Instagram: @hayesfamilyvlog

Our Beautiful Alopecia Princess

If we could only choose one word to describe our daughter it would be “incredible”. In November of 2016 our daughter Malia was officially diagnosed with Alopecia Areata. However, she has had it since she was a year and half old. 

It all began very slowly. At the age of 2 her hair had completely fallen out; her eyebrows were completely gone and then her eyelashes fell out. This gave us major concern as to our child’s health so as parents due, we took her to a dermatologist. They told us not to worry and that hair loss at Malia’s young age is normal but that it could be Alopecia. She suggested that we continue to watch her hair growth and that if it continued, to come back for another checkup. 

Within a year of this appointment Malia grew patches of black and white hair that would inevitably fall out. This cycle happened often. We would get stares and even be approached by strangers asking if Malia had cancer or how her chemotherapy was going. When we would tell them that she was not sick the next question was, well what’s wrong with her and sadly we did not have an answer. So right before Malia’s 4th birthday we scheduled a checkup appointment and behold she was diagnosed with Alopecia Areata. 
It’s funny how badly you want an answer to something and when you get it, it’s not what you want to hear. I’d be lying if I told you I was not sad and upset. I was and so was my husband. As her mother the first thing that went through my mind was, what did I do or not do properly while I was pregnant? I put so much blame on myself and cried for a week. We realized that being upset about it doesn’t change anything nor help the situation so we decided to face this head on and learn everything that we possibly could. And you know what? It helped! So we began to look for support groups and basically anyone else who has Alopecia that we could reach out to. 
As a family we watch a lot of YouTube. Fail videos, family vloggers, Disney vloggers, theme park vloggers and basically anything funny. So we decided to see if there was a family on YouTube who had a family member with Alopecia. The search came up with zero results. We found a lot of adults with Alopecia which is lovely but no children for Malia to relate to. So that day we decided that maybe we could help other families and children who have Alopecia by making fun family vlogs! We figured if we could inspire someone with Alopecia to live their life openly and freely then maybe we could make a difference in brining awareness and acceptance. And you know what, IT WORKED! We have been introduced to so many wonderful people with and without Alopecia who are not only kind but are wanting to help spread the awareness. 


In the end, as Malia’s parents we try our absolute best every single day to build the confidence she possesses. She is the most beautiful person inside and out, we could not be prouder.

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Guest Post: Paul Foley, brain stem glioma

Paul and his lovely family have been our neighbours for the last 17 years; they are not only neighbours, but our friends. Paul’s story is a tough one to read but one of great importance, not only because he is spreading awareness about his brain stem glioma, but because he has a question to ask.

He needs a new wheelchair to improve his quality of life – pop over to YouTube and search TEK RMD wheelchair and you will see how incredible it is. However, this chair costs £18,000. A cost that no family will be able to afford on their own. Then comes the next stages of his treatment, at a cost of between £50-100,000. So Paul and his family are reaching out to ask for help, for our help to raise funds to make these unthinkable improvements to his life.

Please read his story below and donate if you can, it doesn’t have to be much, every penny counts and no matter what you can afford, Paul will be so very grateful. Share the heck out of this blog post, share Paul’s story and share the link – if any family deserve your help today, if any family deserve your good deed for the day, then this is them. Thank you in advance for your support, love and kindness – I will now pass you over to Paul.

#hairlesshannah

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Before I tell you my story, I want to share with you why I’m writing this guest post.

I’ve now had 5 courses of chemo and there have been some slight changes however, I’ve decided I need to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I’ve set up a funding page with the aim being to get one of these to improve my life. Then there is the next course of treatment – a course of immunotherapy which will complement the chemo. The robotic wheelchair is approx. £18k and the immunotherapy as much as £6k per month. I have set the target at £30k knowing it would be more and the response so far has been amazing. We raised £20k in a week and are now just under £24k with about £15k expected from planned events. I suspect though we will need double that total for the treatment I need.

I head up to Guys tomorrow for chemo course no 5 and hopefully get some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

So, if you would like to help out by organising a fund-raiser or simply donate, please head to this link and know that both myself and my family will be forever grateful. The page can be found on the gofundme.com website, search Paul Foley and you will get all the information you need.

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Now for a potted history of my story, by Paul Foley.

For two years leading up to a diagnosis in September 2012, I had a series of GP appointments where getting heard on the specific symptoms I was experiencing was a real struggle. Basically I had a dull, deep-seated headache that did subside gradually over time but I knew was different to any stress or migraine type headache I’d had. One GP helpfully told me to try Yoga as it appeared to be Spondylitis – I laughed and said, “no mate this isn’t muscular-skeletal, this is deep inside like a gland pain” – my exact words – Yoga, seriously?!

I then had 2 or 3 ‘episodes’ that Summer, brought on by heat (sauna) and alcohol, which all resulted in a prominent limp where I had to drag my right leg along – it just wouldn’t work. The next day I’d be wiped out but the limp was gone so I assumed it must have been a blip. Between June and August it didn’t seem to flare up other than having a weird feeling like someone grabbing the back of my neck in meetings at work. Then on the treadmill in August I noticed that the quicker I ran, the right leg just couldn’t cope so I’d stop and do stretches either side but the right leg still wouldn’t behave. So back I went to the GP and back to A+E for a scan…but still nothing.

On holiday in SW France in August 2016, I drove a camper van that week, there and back from the UK and that’s when I noticed that driving was getting tricky. The key turning point was one day in August when I woke very early and my whole spine felt wobbly and weak, I could barely walk. I wanted to walk my youngest to her primary school as I ‘wasn’t sure how much longer I’d be able to walk’ – I remember knowing I was in trouble. I have always known I was in trouble – the medical staff have always been on catch up unfortunately. I broke down on the park bench in the Rec next to her school as I just had a feeling this was very bad.
I headed straight over to the GP and eventually saw the right one – he listened, he knew more about neuro issues, no talk of Yoga – he agreed this was neurological not mechanical – I’d had ankle, knee, muscular injuries over a 20 year semi-professional football career and I knew this was different. He sent me with an urgent letter to take to A+E.  I went to the PRUH at Farnborough and there is where they found it, finally ,on the MRI scan. A lesion / blood / swelling at the bottom of my brain, a really bad spot…won’t be able to get to it so highly likely zap it with Radiotherapy and / or chemo. Bang. Shock. Relief they found something but please not an inoperable tumour. Pulled curtain back……silence, shock, fear, tears, some anger, resilience, creeping determination, some grit and a firm upper lip – I’m never giving up. 

So treatment – all arranged swiftly – all well explained by my very knowledgeable and straight talking consultant – I liked her, she was like a brain specialist version of Mary Portas. The options were limited to two – intensive daily doses of radiotherapy to the brain for 6 weeks and Chemotherapy if that didn’t work.

So every day for six weeks we went to Guy’s, getting zapped to the brain at their advanced Radiotherapy department using a machine that only hits the hotspot of the tumour reducing peripheral damage…supposedly. It didn’t though as I suffered hearing and taste issues to name but two. To ensure the tumour was getting hit they fit you with a bespoke heat moulded mesh mask which is bolted to the bed so you can’t move. You may have seen on the TV cancer ads running at moment. It’s not nice, it’s claustrophobic, you can’t breathe, swallow or cough at all. The only good thing is the zapping is quick, say 5 mins for all of the effort required to get there.

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One slog through rush hour to get home springs to mind as this commuting zombie who could clearly see I was shuffling along with my ticket in my mouth, whacked into me on purpose as I was delaying him all of 5 seconds. I dropped my ticket and hollered after him on a packed platform using my full range of expletives. I wanted to knock some sense into his thick skull but he scarpered up the stairs – he heard me ok – and like a Dalek I was undone by the stairs. As the weeks wore on and the dreaded steroids took a hold, I filled with fluid at every available void and my face got fuller, that bespoke mask fits a face that no longer exists. It’s tighter, more claustrophobic but don’t mention it,  just a few more sessions to get through.

As a bit of advice from someone who has blown up on steroids, if you want to pass comment – don’t. It’s just irritating. Pre-illness I was 6 foot 2, 14 stone and with low body fat and higher than most general fitness. I’ve never been bloated or swollen or overweight. So when people say ‘cor you’ve put on some timber’ or ‘you’ve blown up’ it is just going to grate. Yeah I’m ill, I’m on horrible drugs that just fill you with fluid, I can’t move – funny my body shape has changed! The things people say to you when you’re ill never ceases to amaze me. So many ‘friends’ I just can’t be bothered to talk to anymore – illness polarises your attitude to friends.  Some are brilliant and surprise you and some are just so self-absorbed in their own world they just don’t get it. It is a cliché but illness just strips away the things that don’t matter and you really notice it in others and you get a great radar for selfishness. I couldn’t care less about the weight gain (4 stone currently) it’s a by-product of the illness but the daft comments can do one! I get uncomfortable because I can’t move so well as I’m bloated but it’s just how it is, no more knocking out ab crunches on the bench – I’ve come to terms with that – seemingly others haven’t.

So the treatment finishes and towards the end I start to get a spasm/twitch during zapping – that can’t be good. I can’t taste anything and my hearing goes all ‘electronic’. I asked the pleasant Radiographer about it who replied, “oh didn’t they tell you that?” – unfortunately an all too familiar comment over the next 4 years. She showed me a coloured image of my head which actually shows in ‘glow’ the peripheral damage as the radiation goes through healthy brain tissue. This is the first time I’ve seen this. There is not enough explanation or understanding around radiotherapy especially to a highly vulnerable and sophisticated organ like the brain. You are putting radiotherapy into your brain through healthy parts to get to a tumour – just stop and think about that for a minute! There is a lot of publicity around the Gamma knife and Proton Beam therapy machines with the Proton option being the one the family took their young child abroad and paid for treatment. Young brains that are still developing are more prone to damage from ‘standard’ radiotherapy – they don’t care so much about the older messed up brains. Well, the NHS paid millions for two Proton machines but couldn’t afford to run them – I believe there are some up and running now. The principle makes sense if you imagine a clock face Proton delivers a spread of safer strength beams at 12, 1pm, 2pm and so on which all focus in a concentrated point at the tumour with hardly any peripheral damage. It would have been preferable to have this treatment.

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That continued for three years of ‘stability’ as they call it which basically means you will get symptom changes, numbness, loss of feeling or some movement, reduced endurance etc but if your MRI scans show the same then you are ‘stable’. In some ways it was stable, I was making it into work most days, I was limping around but just about able to do what I had to do. I was getting lifts to work for a while and then back driving when I was able. 

Then around September 2015 things started to deteriorate, I was having to stop more frequently and ‘re-set’ my walk. It got worse and worse and I could barely cross a road in one go. Getting upstairs was very difficult. This changed quickly over the next three weeks to the point I couldn’t stand for long and started to stoop making tea etc unable to stand up straight the back muscles just giving up. I told the hospital every time a new symptom appeared and they advised that the scans were showing ‘no change Mr Foley’. By Christmas I was really struggling to even get around the house and some nights couldn’t make it up the stairs. I couldn’t get my right sock on, eating was one-handed now, shaving/using toothbrush etc, I couldn’t get in and out of shower anymore so it was sitting by the basin and washing. One day at home I stood up to do my belt up and just as I went to fasten it I fell like a tree without getting my hands out onto the breakfast table smashing my nose and rolling off onto the floor. No one was in and I couldn’t get up, so rolled my head onto the timber floor to save the gushing blood from ruining the rug. Hannah’s dad had to rescue me as no one else could lift me off the floor.

A few weeks later another fall, this one as I went to transfer from wheelchair (which I was in now) to toilet but as I stood my leg locked and I fell against the tiles holding my body at 45 degrees with my all of weight-bearing onto my head. I called out, managed to slide down onto the closed WC putting my chest onto the toilet and then sliding onto the floor where I was unceremoniously dragged into the hall to wait for the ambulance to get me into my chair as it was 2am – we couldn’t ask Richard this time! We waited two hours on the cold floor, they got me back in the chair, ran tests and it was 6am before we knew it.

In February 2016 the decision was reached to put me on a 6 month course of chemo ‘empirically’ which basically means ‘without any clinical reason’ so try it and see. I was happy with this though as I was desperate to try something. Then around September  2016 the decision was made to switch chemo to a more powerful chemo, PCV. Around the same time Matt called home with some interesting news, the medics at Oxford had found an extremely rare and specific antibody only found with a condition called Devics or NMO. It could be managed much like MS and may be an improved prognosis but more tests required. So they ran tests alongside continuing the current treatment plan of chemo until we know for sure. A month later the experts told us it is categorically not Devics, despite the presence of a Devics specific antibody. A huge disappointment as an improvement possibility disappeared and the communication + management had been very poor.

I’ve now had 5 courses of the chemo and there have been some changes however,  I’ve now decided to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I decided to set up a funding page for this and a course of immunotherapy to complement the chemo. The robotic wheelchair was approx. £18k and the immunotherapy as much as £6k per month. I set the target at £30k knowing it would be more and the response was amazing. We raised £20k in a week. We are just under £24k with about £15k expected from planned events. I suspect though we may need double that total.

I head up to Guys tomorrow for chemo course no 5 (of new chemo) and hopefully some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

Hopefully I get answers, hit my fund target and get continued improvement on my mobility.

Thank you for reading my story, for sharing it and for possibly being able to help me raise the money I need. 

Paul Foley 

Guest post from Dad

It may may be at the eleventh hour on the last day of alopecia awareness month BUT dads emailed me over his blog. After what a has been such a special, fun evening, I didn’t expect to be crying just before bed….have a read and you’ll see what I mean.

#hairlesshannah

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“I want to cut the rest of my hair off – will you do it?” This is not a question I ever thought I would be asked – or have to answer. But this was not a spur of the moment question, it had been thought about for a long time and, as Hannah has done so many times over the last year, she was making the best of a very bad job. She had investigated the Little Princess Trust and found out that her hair could be used for the benefit of those less fortunate than herself. Remarkable.

So, after employing delaying tactics by asking if she’d prefer me to ask the local barber, there we were, in the kitchen, with scissors, a beard trimmer and an electric razor – and a ruler as we had to make sure that the hair we cut was at least 17cm long!

Making the first cut was heart breaking, just knowing what Hannah’s hair meant to her and not knowing what the final result would look like. I know it was hard for me, so goodness knows what it was like for Hannah – hearing the scissors and seeing great clumps of hair coming off. And then for that to be followed with a beard trimmer to get the remaining hair short enough to finish with an electric razor. It probably only took 15 minutes but it must have felt like hours.

We all meant it when we said that she has a lovely shaped head – but how little that could help. Even now, 9 months later, we are used to seeing Hannah without hair – she puts a very brave face on, but we know how much she suffers each time she look in the mirror.

When your children are little and suffer illnesses every parent wishes they could be in their place to take the pain for them. That feeling doesn’t lessen as they grow older – if I could lose my hair ( and there’s less of it by the month!) for hers to grow back, I would gladly do it.

They say what doesn’t kill you, makes you stronger. I’m sure Hannah doesn’t see it like that at the moment, but she will get better and she will be stronger for the experience. What she has done to raise awareness about alopecia whilst being far from fighting fit herself, has been incredible and is just one indication of her inner strength, and me and we, her family, could not be more proud of this remarkable young lady.

All my love, Dad X

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Guest blog 2 – a mum’s perspective

The last eleven months have been so tough and I have always been conscious of how it has impacted my family. To go from having an ‘empty nest’ to having all four of us at home again, one stressed NQT, and one ill, unemployed child can’t be easy. However, not once have they complained, not once made me feel like a burden, not once have they allowed me to feel alone in this horrendous ordeal.

Parents have this unwritten rule that they have to be the strong ones and I can only imagine what it must be like to see one of your own children fall ill, lose their hair and identity and become isolated from all they know and love. I feel terribly lucky that although we have a relatively small immediate family, we are blessed with such a large extended one.  Therefore, I know that mum, dad and maybe Jack (!) have people to talk to about what’s happened and offload their worries and upset and be comforted when it’s needed.

I asked mum, dad and Jack if they’d like to write a post from a families perspective of how alopecia has impacted their lives and I could see the trepidation in their eyes. However, mum has done it (no pressure boys!) and although it made me cry, it was a relief to actually read what I probably already knew about how she has felt about everything. So, here it is, guest post #2 from my best friend in the world.

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“Typical of our daughter, she didn’t tell us how poorly she was because she didn’t want to spoil our holiday in Madeira: that was last October. When she came home we could see how distressed she was by her hair loss and really believed that a few weeks’ rest and TLC would restore her to full health and she would be able to return to Dubai at the very latest by January.

How wrong could we have been? During the weeks that followed, more clumps of hair fell out: her eyebrows and her eyelashes followed soon after. With some trepidation we visited a recommended salon in Notting Hill and bought the first hairpiece. Standing there watching Hannah have it put on and styled seemed such an alien thing to do but we believed it would help to restore some of her confidence: wrong again. I had to come to understand that for Hannah, not having her own hair helped to rob her of her own identity and she just felt ‘all wrong.’ I hated the situation then and I hate it even more now, eleven months on.

As laudable as it was for Hannah to have done the research and measure the longest parts of her remaining hair so that it could be donated to the Little Princess Trust that makes hair pieces for children who suffer from cancer, I cannot begin to tell you the size of the boulder that lodged in my throat when Richard, as requested by Hannah, shaved the remainder of her beautiful hair off. It seemed such an abominable and sacrilegious act: necessary for all of the right reasons but just plain wrong.

During the weeks and months that followed, what an irony that the constant pins and needles in her face and scalp even robbed her of the privilege of even wearing the hair piece. Seeing her struggle downstairs at times as a consequence of the muscular pain she also has to endure, is almost too much to bear at times. Normal family times sitting and watching the television have also had to be adapted as noise and light intolerance mean we watch in semi-darkness and often have to have the sub-titles on – if I’m honest we were doing that more often anyway on account of our own hearing problems so that hasn’t bee too much of an issue!

It has never ceased to amaze us that for the most part, Hannah has kept so positive and focused on all of the good things in life: forever thinking of other people and their needs, ever aware and concerned about others and their problems.

She was the one who organised our joint birthday party in July – the guest list; the play-list; the decorations – not to mention the help she gave in actually baking the cakes – no mean task I can tell you when your hands are swollen with muscle pain. She was the one who contacted so many of my past colleagues and pupils in order to collate the treasured memory book which she presented me with when I retired and of course, more recently she co-ordinated the biggest surprise of all, the arrival of my much loved brother Chris who travelled from Toronto to celebrate my birthday in Swansea – get my gist? Forever putting others first: what a star.

Thank goodness for the amazing support we have had in the form of friends and family and most notably the ones who give up their own time to give Hannah reflexology and reiki – words can never express our gratitude to them. When I go to my aqua class, I don’t talk about Hannah’s condition unless I’m asked as when I get into the water, I switch off for an hour or so and let everything drift away. But I do know who I can turn to if I need to and that is priceless knowledge. Unlike me, I haven’t given in to venting my own full emotions yet – I know that I have to keep strong and that’s what us mums do isn’t it?

We have had our laughs along the way, as many of you will know from reading Hannah’s insightful and informative blogs. But there is one niggle I have and I’m going to tell you what it is. It really doesn’t help when occasionally people say ‘it could be worse.’ We know that. We do have hope and we do believe Hannah will get better. We also know that there are many more people in this world who have the cruellest of situations to be dealing with and some of them haven’t even got the close family and friends that we do but – well – just saying!

Imminently, Hannah will see a specialist at King’s – we are hopeful that he will be able to point us in the right direction in terms of a diagnosis and recovery: it is all so unfair. At thirty years’ old she should be out there continuing her amazing career: I often think of all the children who are missing out because they haven’t got ‘Miss Green’ and all of her loving care and skills in their daily lives. She should be going out with her friends and not worrying about being too tired to do so. I hate what this condition is doing to her: hate is such an emotive term but this is how I feel. And I make no apology for it.”

Cath Green

Thanks for reading…share the post and keep the #awareness going.

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#hairlesshannah

 

My first guest post for #alopeciaawarenessmonth

So, September is upon us which means:  Alopecia Awareness Month.

I have been overwhelmed by the support people are showing me but I am saving all of the fundraising/awareness raising that’s taking part for a blog at the end of the month!

I’ve thought a lot about what I’d like to post during the month and wanted to do something different. I’ve written extensively about my experience with alopecia so I thought it would be interesting to have some guest posts from others who are living with the disease or those who don’t have the disease but have friends or family members that do.

Talking about our feelings and experiences can be very hard, but knowing there are people out there who can empathise, support and help, makes all the difference. So, here it is, I am excited to publish my first guest post by someone who also lives with alopecia.  They have taken the brave step to writing about their experiences after suffering with the disease for ten years.

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“My relationship with alopecia began when I was twenty and found a small coin shaped patch at the back of my head. At that point I wasn’t too worried and after being reassured by the doctor that it would go away, I began to forget about it. However, it didn’t go away.

Gradually over the course of a year I lost a quarter of my hair including some of my eyebrow hair. At that point I went to a dermatologist who confirmed that it was alopecia, that the cause was autoimmune and that it was unlikely to come back. Following the appointment I realised that I was going to need a wig (I hate the word) and this whole topic caused a lot of friction at home. This was mainly because I was mourning the loss of my hair and I wasn’t ready to accept that it would never grow back but also because of my parent’s concerns and sadness that this was happening to me.

Then came the hard part of choosing a wig that I could wear and not feel like I was going to a fancy dress party! For me it was important that my wig looked natural, that it was inconspicuous. I wanted to blend in and not to be stared at.
After finding a wig that I was comfortable with I began to feel more relaxed about my alopecia and no longer self-conscious about going outside in case a gust of wind exposed my bald spots! When I was twenty-one my hair began to grow back; beginning first with my eyebrows and then my hair. It grew back to the point that I no longer had to wear my wig but I did still have some patches where hair would not grow. Inevitably, my hair began to fall out again and this, on reflection, was the hardest point in my relationship with alopecia.

I began to feel very self-conscious about going out again, I lost my confidence and just felt generally miserable. I had to go back to wearing a wig and it took all of my inner strength and bravery for me to accept that I was back to square one.

For the next two years, with the help of my wig, I continued my life with regular normality. My hair would occasionally grow back in small patches and then fall out again but because it was under my wig I didn’t really care. It was only after a particularly stressful time at work when my eyelashes began to fall out, that I began to feel the impact of alopecia once more. Watching my eyelashes come out one by one and knowing that they probably wouldn’t come back was heartbreaking. Alopecia was taking the last thing that I had, my eyelashes. It seems silly but they were the last hairs that I had that were real, that were mine.
Still, I didn’t let it beat me. I looked into having eyelash extensions and semi permanent make-up. I settled on semi permanent make-up and I have since had both my eyebrows and eyeliner tattooed so that I no longer looked like an alien in the mirror! A big part of alopecia is accepting the person that you see looking back at you in the mirror. Most of the time I do accept what I see and I look at myself without my hair and don’t cry, but sometimes I do wonder what I would look like with my own hair again. Looking at old photographs of myself does make me feel sad and I do miss what I had.

I often wonder how the old me in the photograph, with her own hair, would have reacted if she knew what was to come. If I could speak to myself before alopecia I would tell myself that it will be ok, that I will be ok and that alopecia shouldn’t stop me from living my life.

There are certain things that I feel I can’t do like go swimming and put my head under the water (my eyelashes fall off!) but that’s a small price to pay to be able to continue to live my life with some degree of normality.
Alopecia is a part of me and although it has changed me as a person, I don’t want it to define me. I accept that I will most likely always have it and I’m not prepared to let it stop me going out and living my life.”

Anonymous

 

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I read this post and found I related to so many of the issues raised. Like I said, knowing that there is an opportunity to network and talk to others who truly understand is a huge relief. So I’d like to thank the author for being brave enough to share their story and experiences of living with alopecia.

Remember to take photos and send them to me if you do any awareness/money raising activities – Fun Hat Friday is an easy to organise event and you’ll have a laugh along the way! I have created a primary and secondary Power Point if you’d like to do something in schools, just contact me and I’ll be happy to ping it over.

Please share the blog and let’s make sure #alopeciaawarenessmonth educates more people on a disease that impacts on so many people.

 

#hairlesshannah

xx