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My previous post, “Your Skin in 500 Words“, mentioned Natalie who is one of the creators of the Skin So Many Words Project. To show the solidarity of all with skin conditions, here is a post written by Natalie about her skin condition, Vitiligo.

“I was now a young mixed race girl of 4, with skin that was 80% white”

Whilst Psoriasis and Vitiligo are two very different skin conditions, some may agree there is some similarity, in that they can both have an affect on a person’s emotional wellbeing and the day-to-day choices that person makes. I have battled with Vitiligo since I was a teenager, having developed the condition when I was a baby. Here is my story…

I was just 2 years old when the white patch appeared ‘innocently’ on the back of my hand. No bigger than a ten pence piece, it sat boldly on my caramel coloured skin, eager to ensure it was visible for all to see. Whilst it was unusual in shape and colour my parents weren’t too alarmed when my GP couldn’t confirm what it was, after all it wasn’t causing me any pain nor was it irritating my skin.

Quite some months later, more patches started to develop. Dotted across my body like paint flicked on white paper, it became apparent that my skin was slowly turning white with very little control. Back to my GP I went. This time, my parents determined to get answers about my rapidly changing skin colour. However, once again, my GP had no clue about what was happening to me. He quickly referred me to a dermatologist where it was later confirmed I had Vitiligo and it was incurable. Eventually my skin settled. However, I was now a young mixed race girl of 4, with skin that was 80% white.

My parents were well aware my rare skin condition, that affects just 1-2% of the world’s population, wasn’t going to go unnoticed. Naturally they tried to prepare themselves for the potential challenges that came with having a child that was ‘different’. One of my most poignant memories was how my parents encouraged me not to cover up. They allowed me to wear pretty dresses, shorts and t-shirts in the summer, and a swimsuit on the beach. At such a young age, my world was full of innocence. I had no idea there was such a thing as ‘normal’ and so I lead a childhood completely unfazed by my indifferences.

Soon after diagnosis, I began treatment. I tried oral medication, topical steroid creams and homeopathy. For years I was trying to regain my natural skin colour, but nothing worked, in fact I firmly believe the mix of chemicals made my skin worse.

As I approached my teens, Vitiligo became the center of my being. I began recognising my skin for what it really was; a flaw. Self hatred kicked in and I became obsessed about covering up, even during the summer. I was sucked in by images in magazines of girls with long straight hair, the ideal figure, perfect teeth and the one thing I desired most…flawless skin. I became self-conscious and was paranoid that people found my skin repulsive.

One of the biggest challenges with having Vitiligo, is the feeling of isolation. The feeling that you are the only one in the world living a tormented life caused by a skin condition. I later joined the Vitiligo Society, which provided me with the support I needed. It allowed me to open up and talk about my experiences with people on a journey similar to mine. I got great sense of comfort being around people I could finally relate too.

In 2014 I gave treatment one last go. I decided, with referral from my GP, to try UVB Narrowband treatment. I wasn’t hopeful it would be a success. When you have an incurable skin condition, the last thing you are is optimistic. Turns out I should have been, because within 4 months of being treated, I was starting to regain my natural skin colour. Miraculously, after 12 months, my patches were reduced to just 20%.

Decades later and I’m finally at peace with who I am. Acceptance started in my thirties, when I started to realise just how many forms of beauty there are outside magazines and social media. I looked back at my life and realised I’d accomplished things I never knew I would and I felt proud, so why shouldn’t I be proud of my skin too?

Author – Natalie Ambersley

If you were asked to write about your skin condition in 500 words could and would you? It is something I am going to attempt to do for a project called “Skin So Many Words.” This is a project I have been invited to take part in by Natalie from Skin Community UK. Here are a few words from Natalie:

Myself and Michael Willcocks recently launched a project called ‘Skin So Many Words’ which is aimed at educating and raising awareness about skin conditions which, as you know, gets very little coverage. The idea is to produce a book/ebook of stories/essays by those with skin conditions such as Psoriasis. The idea is based on the successful story writing competition launched by Chris Evans called BBC 500 words which has been a great success every year. 

Natalie has Vitiligo, a condition where white patches form on the skin. Whilst this is not the same as psoriasis, both Natalie and I agree that skin conditions share many of the same symptoms especially where mental health is concerned. I have friends with eczema and often find talking to them about our daily lives it is very often similar.

“Skin So Many Words” will bring together all skin conditions which I believe will show just how similar our experiences are and bring us together as a wider skin community (to steal Natalie and Michael’s term). The book will be free and this does mean that all stories need to be donated for free. All authors will be credited for their work.

So if you would like to know more please visit Skin Community and start thinking on what your piece could be. You can write anything you like as long as it is within 500 words so be that a poem a short story, a vent of frustration. Be as honest and real as you like or let your imagination run wild.

Please do not send your stories to me though, I am helping to promote the project only so please contact Natalie and Michael through their website or email them at workmdw@yahoo.co.uk. Also look out for the next post on here which will be a guest blog from Natalie.

They are also on Twitter @Schooldermtime

 

 

Summer is approaching, well this is Britain so I think it’s approaching. Seen some blue skies and we had a couple of hot days, summer might even be over already. Anyhoo, the season itself is on its way and this means sunny days, holidays and the thought of whether to bare skin or not.

Now this post really is for those who aren’t brave enough. Let’s face it, if you are confident to bare your skin then that is great and you clearly don’t need advice from me as I am still in the cover up clan. Let me add though that I have never been that confident to show too much skin, my legs are white and pasty and trust me, you don’t want to see them wandering down the street.

So for those that are like me and want to cover up but stay cool in the hot weather these are my top tips:

  • Wear linen, it is light and cool and often feels good against your skin when you have a flare up. I generally wear short sleeved linen shirts as my arms aren’t too bad.
  • Covering up isn’t a bad idea in the summer anyway, Think of the hot countries wear the locals tend to cover up because of the sun. Not having direct sunlight on your skin can keep you cooler.
  • Wear a hat. Okay, this won’t cover your legs or arms, it helps you stay cool though. Don’t go for dark colours as these will just make your head hotter. There are some really nice straw type hats these days and thanks to the likes of Olly Murs, Jonny Depp and other stars, hats are very much seen as a cool fashion accessory. Keeping cool when you have psoriasis is essential as it will stop you feeling uncomfortable and hopefully keep the itching at bay.
  • I have psoriasis mainly on my legs and even being quite clear you can see the darker patches it often leaves behind. To compromise I will sometimes go for three quarter length trousers. I feel like I’m wearing shorts but pretty much covered at the same time and hardly notice anyone staring. It gives me a bit more confidence than wearing normal shorts.
  • Use sun screen. I know UV light can help us, please do not burn yourself though as this could make your skin worse. Use at least factor 15 or higher. You will still get the goodness from the sun. I usually go for factor 30 and find my skin still improves in the sun.
  • There are some moisturisers out there with sun protection too so keep an eye for those. Your local chemist should be able to advise.
  • Keep away from moisturisers with sun-sensitizers. There are more than you may realise and some of the big brands are in this group. This is where the cream makes your skin more sensitive to sun and in turn you will be more likely to burn. Again ask your pharmacist or healthcare professional. If you are seeing a dermatologist they should be able to advise also.

 

Please note that this is not intended to give healthcare advise. Please always consult your GP or healthcare advisor.

 

 

This year sees the return of the Psoriasis Shout Out®. It is a great event which even Bob The Cat has got behind. If you need advise on psoriasis whether you are a patient or someone who lives with someone with psoriasis drop by and have a chat. I am very happy to be able to attend the event at Guys Hospital on the 24th June, unfortunately Bob can’t make it.

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What is the Psoriasis Shout Out®?

The Psoriasis Shout Out® is a unique public engagement initiative to raise awareness of this chronic, often life-ruining, inflammatory skin condition. We aim to get people talking about psoriasis (what it is and what it isn’t) and to bring patients together with professionals working in the field of psoriasis management and research to discuss current research and treatment.

The Psoriasis Shout Out® is led by Professor Chris Griffiths, a world-leading psoriasis expert from the University of Manchester and Salford Royal NHS Foundation Trust. We have established a dynamic group of patient ambassadors from across the UK and Ireland who have played a key role in taking the Psoriasis Shout Out® forward by informing and supporting our activities and events. 

Psoriasis Shout Out® Roadshow June 18-24 2016

Building on our previous success, the Psoriasis Shout Out® is expanding its reach beyond Manchester to other regions and cities in the UK and Ireland in 2016. Researchers, clinicians, patients and the public are again joining forces to raise awareness of the condition with the aid of a healthcare trailer and a number of free patient events planned in Manchester, Dublin, Newcastle and London. Our Psoriasis Shout Out® Ambassadors will be on hand to provide peer support, acting as ‘patient experts’ and signposting members of the public to further information on psoriasis.  

Healthcare Roadshow 

The roadshow has a fully-equipped healthcare trailer where members of the public can engage with healthcare professionals and other people living with psoriasis. In Manchester, the trailer will have sessions on Mindfulness and Bhangracise – a new fun way to keep fit. In Dublin, the trailer will be hosted by Professor Brian Kirby (Consultant Dermatologist, St Vincent’s University Hospital, Dublin) and Helen Hanrahan (Flaky Fashionista), an experienced fashion blogger and patient advocate. 

The trailer will be at the following locations in Manchester and Ireland during June:

  • 18-19 June Piccadilly Gardens, Manchester
  • 20 June The Rock Shopping Centre, Bury
  • 21 June St Ann’s Square, Manchester
  • 22 June Salford Royal NHS Foundation Trust, Manchester and
  • St Stephen’s Green, Dublin
  • 23 June St Stephen’s Green, Dublin 

Free Events 

We will also be holding a number of patient events at various locations during the week. More events will be added to the schedule before June and will be announced on our website and social media accounts.

18 June, Manchester Central Library, St Peter’s Square, Manchester 

Let’s Talk Psoriasis A series of presentations and speaker/audience discussions on a range of topics about living well with psoriasis, advice and current research into the condition chaired by Prof Chris Griffiths with guest speakers including Toby Hadoke (actor, comedian and patient advocate).

Look Good, Feel Good Helen Hanrahan (Fashion blogger and patient advocate) and Rena Ramani (make-up artist) will demonstrate how to improve confidence in your appearance using fashion and make-up tips to help you camouflage, conceal and even embrace your psoriasis!

21 June, Royal Victoria Infirmary, Newcastle 

Clinical speaker presentations with Q+A session chaired by Prof Nick Reynolds (Consultant Dermatologist), mindfulness sessions and a staffed patient information stall.

22 June, Salford Royal NHS Foundation Trust, Manchester 

Let’s Talk Psoriasis A series of presentations and speaker/audience discussions on a range of topics about living well with psoriasis, advice and current research into the condition chaired by Prof Chris Griffiths with guest speakers including Carla Renton (The Psoriasis Association) and Dr Richard Warren (Consultant Dermatologist).

Pso Well Training Taster GP training events, based on research evidence, to provide cutting edge knowledge about psoriasis and its comorbidities and to equip GPs with consultation skills to assist patients in self-managing their condition more effectively.

Talking About Psoriasis With Your GP Getting the most out of your GP consultation with Dr Chris Bundy and Dr Anna Chisholm from the University of Manchester. This session aims to give patients with psoriasis the confidence and skills to get the most out of their often time-limited consultations with GPs.

24 June, The Atrium, Guy’s Hospital, London

Clinical speaker presentations with Q+A session chaired by Prof Catherine Smith (Consultant Dermatologist) and Dr Sandy McBride (Consultant Dermatologist) with support from high-profile patient advocates including Toby Hadoke and a staffed patient information stall.

Psoriasis: A Life Story Preview of a unique production, performed by patients, giving their perspective of living with psoriasis.

Patient information leaflets, videos and other educational material on psoriasis will be available at all of our events.

 

For more information please contact:

Susan Moschogianis, Psoriasis Shout Out® Coordinator 

Email: susan.moschogianis@manchester.ac.uk

Tel: 0161 206 8077 | Fax: 0161 206 1095

www.psoriasisshoutout.co.uk

 

I was thinking the other day about what I would give to have never had Psoriasis in my life. At the time I was watching Doctor Who and it made me think of going back in time and changing my timeline. Is having Psoriasis one of those points in time that I cannot change, that would always happen no matter what I did? Or is it possible to go into the future, find a cure or vaccine, bring it back and stop my younger self ever getting it at all?

There is a slight problem that I am neither a Time Lord nor do I own a Tardis, well not a real one. At least I don’t think the one on my key ring counts. Anyway, it got me to thinking, would I really want to change things? It is one of those deep philosophical questions one asks themselves from time to time and in true Simon fashion I went down the Doctor Who route rather than anything deep and meaningful.

If I seriously ask myself the question then the answer is “I don’t know”. Psoriasis has taken me on  journey not just to new places, it has taken me on a journey through my soul. I have gone from slightly irritated by it, to annoyed, angry, depressed, denial (a river in Egypt). See I just can’t stay serious about it no matter how hard I try.

What I do know is that Psoriasis has taken me to places I never thought I would go. I have been to Parliament for the launch of an awareness campaign. Psoriasis has had me chauffeured around Dublin and invited me to various companies to discuss and share experiences. Without Psoriasis I would have done none of this.

Psoriasis has introduced me to new people, some of which are now very good friends. It has made me part of a global community. Something very alien to a person who in the past has never had a large circle of friends and was always so keen on his own company above others.

Psoriasis has had me on the radio, on tv, I have been interviewed numerous times and even called upon to consult,and soon what will be my third professional photo shoot. I have even part written a book with my wife and some of my psoriasis friends. My life, no matter how much I want to have psoriasis out of it, is very much because of psoriasis. It is one of those strange situations where I find myself being grateful for psoriasis. I would not be the person I am today without it. I would have been someone else (see my last post).

The journey will continue and, unless there is a cure, it will continue to take me to new places, beyond civilisation, to boldly go…….. oh hold on, that’s Star Trek. I get to steer every now and then too, see psoriasis isn’t all bad. Psoriasis just needs a bit of guidance, a bit like an unruly teen or a poorly trained dog.

There is something else though, others are on this journey with me which makes travelling with psoriasis much easier. My wife, my family, friends, healthcare professionals, pharma companies and those who work every day to support and raise awareness and don’t forget Bob the Cat. They have all decided to come along with me so I don’t let Psoriasis take the lead too often and to make it fun.

So Psoriasis, here’s a surprise for you, thank you, sincerely from the heart of my bottom. (Yep, definitely can’t stay serious.)

 

Who am I? Who am I? I’m Jean Val…… sorry getting carried away there. I don’t quite have the singing voice to be in Les Mis. I don’t know why I started thinking about this, it suddenly popped into my head about who I am and what kind of person I am with Psoriasis. Also who I like to think I am.

So who Am I?

I am a snake who hasn’t quite grasped the skin shedding process.

I am an X-Man with the mutant power to grow skin extremely quickly. Don’t cross me or I’ll shed skin all over you.

I am the Itchy and Scratchy Show when I have a flare up.

I am Grumpy from the Seven Dwarfs when psoriasis is affecting my sleep or particularly irritating.

I am Happy too, I live  life my way… maybe I am Frank Sinatra as well.

I am negative.

I am positive.

I am prone to sudden mood swings. (See the above).

I am stronger than I thought, I have the power to fight something that is battling back just as hard every single day.

I am part of a community and a family which continues to grow.

I am lucky. I have supportive and understanding family and friends who have forgiven my tantrums, helped me through the lows and laughed with me during the highs.

I am one voice raising awareness.

I am Simon.

Who would I be without Psoriasis? I’d still be Simon, I’d just have lost my mutant power, think I’d be Wolverine instead. That way I could be Jean Valjean too. (I know some will get that connection).

 

**Please note that the closing date for nominations has now passed**

I have left this post live as I think it is a great award and should be known that the nurses that help us are being recognised for all their hard work.

I have received an email about this great award recognising  the work of Psoriasis nurses. From my personal view, the nursing staff have bee pivotal to my treatment and are the ones who have made me open up more at appointments. They listen to my troubles, share a joke and gained my confidence as I have had to show the extent of my psoriasis to them. I have pasted the email below:

 

“Just wanted to let you know about the ‘Psoriasis Nurse of the Year Award 2016’ which launched this week.  This new award, supported by the British Dermatological Nursing Group and the Psoriasis Association, recognises the critical role of nurses, and the difference nurses can make to people living with psoriasis in the UK and the Republic of Ireland.

 Anyone living with psoriasis, including their families and friends, can nominate their nurse. The nomination form can be downloaded at www.bdng.org.uk/whats-on/awards and the closing date for submissions is 23rd May. Forms can also be requested by emailing nurseaward@redconsultancy.com.

The winning nurse will receive their award during the BDNG’s annual conference in Bournemouth on 22 June 2016. The person who nominates the winning nurse will also be given the chance to present the award in person.

I’m sure you will agree that this award will be a great way to recognise a nurse who has gone above and beyond in caring for people with psoriasis.  Please do feel free to pass this information on to anyone who you think may be interested in nominating their nurse for this award.”

 

I would like to thank every nurse out there. So often overlooked for the work they do and from my side it is greatly appreciated. You have helped keep me well and sane.

 

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