World Psoriasis Day 2016 - introducing #getyourskinout community events

Happy World Psoriasis Day #WPD16!! Today marks OUR celebration day living with #psoriasis. It’s a day of celebration for all of us living with psoriasis and to acknowledge the HUGE achievements we have made this year getting psoriasis on the health agenda and being the empowered individual!

Today @getyourskinout and I launch our big surprise: #getyourskinout events!! We’re launching the first of its kind, a series of psoriasis meet ups for you, and with you. We want to bring this fantastic community together face-to-face, and give you access to leading health care professionals, to discuss everything in and around psoriasis. How cool is that?

Holly and I will be bringing our contacts together to give you advice from and access to the best dermatologists, nutritionists, sex therapists and mental health therapists (to name a few). These events are about breaking down barriers so TOGETHER we can empower ourselves with the information we need to manage our psoriasis, and help put psoriasis on the health agenda.

Our first event will launch in London on February 4th 2017, with a further three events planned that year. The location and layout of these events are still to be decided, and that’s where you come in. As our community, we want you to help shape these. So, we need to hear from you… where are you based, where would you be willing to travel and who do you want to hear from? Over the next few months we’ll be hosting a series of Twitter and Instagram chats and Facebook Live events to gather your feedback so we can start 2017 with the biggest, most positive psoriasis bang!

These events will be free to attend and tickets for the London event are available now, so reserve your spot now. You’ll also notice an option to donate – we’re currently self-funding these events so any small donations would be hugely appreciated.
So what are you waiting for? Share your#psoriasis pic, sign up to the event, save the date, bring your friends, family and colleagues and of course spread the word. Let’s get #getyourskinout trending for World Psoriasis Day and UK Psoriasis Awareness Week.

Link to the event here: www.eventbrite.co.uk/e/getyourskinout-event-tickets-28919412742  

The Importance of Psoriasis Communities

Whilst I have been utterly rubbish at keeping this blog up to date, I have been busy with all things Psoriasis in the background!

Since I last blogged I've spent a lot of time on Twitter, set up an Instagram channel, took part in a number of patient advocate events, popped over to Amsterdam for the weekend to film a video in preparation for Psoriasis Awareness Week 2016, worked with the Daily Mail and The Sun on two fantastically positive awareness pieces and was featured alongside Kim Kardashian in a separate piece following her blog post to explain that she had come to terms with the condition. 

Filming in Amsterdam for Psoriasis Awareness Week 2016 with #Getyourskinout and @Bryneenee

Whilst I'm still on the roller-coaster of good and bad skin days, I'm having a lot of fun  meeting some fantastically inspirational people and building my psoriasis community. You can read more about this and the importance of building psoriasis communities in my latest blog featured on HelloSkin, here. 

More from me soon, promise! 

Psoriasis Awareness Week 2015

Firstly I want to say a big thank you to everybody who has viewed, shared, tweeted, liked and responded to my recent contagious post for UK Psoriasis Awareness Week - I've had such amazing feedback already and am so proud that I could be part of something so special.

There's a lot of us out there battling with similar things, which is why it is so important for us to talk about it in order to realise that we're not alone and that we have nothing to be ashamed of. I wish I'd have found this support and spoke out about it at a much younger age, as looking back I do regret that I let it stop me from doing some of the things I really wanted to do. Would it stop me now? Hell no! Watch me go.

I've just received another video from our day of filming with @PhilipsBlueLED and Schuco. It's similar to the last but this also features two fantastic experts in the field of dermatology - Dr Anjali Mahto and Dr. Adam Friedmann of Harley Street, London.

If you haven't been diagnosed with psoriasis but you think you have it, then my first piece of advice would be to visit your GP and once it's confirmed ask to be referred to a dermatologist. GP's can only treat your condition so much, they're not experts in skin and tend to give very generic treatments that aren't always best suited to you. You might have to wait for six months or so for your appointment, but it'll be worth it in the long run.

Dermatologists are invaluable for psoriasis patients as they are medical experts who are specifically focused on the diagnosis and treatment of diseases of the skin, hair and nails - they've seen psoriasis of all shapes and sizes and are your best port of call for prescribing treatments.

So if you don't have one - get one.

Psoriasis is NOT contagious!

When I was 13 I took my little sister swimming at the local pool. After about ten minutes of splashing around in the shallow water I was asked to come out of the pool to have a chat with the lifeguard, where I was asked to leave the poolside immediately as there had been complaints from other swimmers that I was contagious. I stood at the side of the pool, as a self-conscious teenager angry and upset trying to explain that it was only psoriasis, it wasn't contagious and that I wasn't causing any harm to anybody. The lifeguard (who in hindsight was very poorly trained to deal with this situation) failed to listen and put the concerns of others over mine, insisting that I must leave straightaway and take this up with the manager once I was dressed and away from the concerned onlookers. 

This wasn't the first time that somebody had asked if I was contagious, but it was one of my earliest memories of somebody showing zero understanding of the condition or compassion towards the sufferer, stood in front of them crying with frustration and embarrassment. 

It was because of this early memory and my internal fury when asked if I am contagious that when contacted by @PhilipsBlueLED and Schuco, I jumped at the opportunity to get involved with a video that aimed to raise the awareness of psoriasis and dispel the contagious myth for UK Psoriasis Awareness Week 2015 (1-8 Nov).

I have to confess that I am not the biggest fan of being filmed, so I was a little nervous with the idea of having to tell my story and show my psoriasis in front of the camera. However, after arriving at the venue and meeting Bryony and Lee (fellow psoriasis sufferers) I felt so inspired by their bravery and enthusiasm to also help raise awareness that all nerves were turned to excitement and we had so much fun! 

And here it is, the first of our videos...

If you are affected by psoriasis, we'd love to hear from you! Get involved with UK Psoriasis Awareness Week 2015 by sharing your experience, help to spread our message on social media using #psoriasisawarenessweek and talk about it with friends and family. 

If you have any questions for me, I can be reached on liannespsoriasis@gmail.com or on twitter @fixmypsoriasis

New TV series, psoriasis sufferers needed

I am a terrible person and have neglected this blog for too long! A lot has happened since my last post, and I do keep meaning to find time to update you on it. I am currently taking a three month break and travelling round SE Asia. This blog isn't an update on that, however (sorry!) 

I've been contacted by a lovely research team called Betty who are working on a Documentary Series for Discovery about Medical conditions such as Psoriasis and relationships.

 

They're looking to have a chat with anybody with psoriasis (or any other skin condition) for some research for the programme - more information and contact details on the image below x

A very belated Happy New Year!

So, yes, a very belated Happy New Year! Don’t worry, I haven’t lost the plot, or the ability to tell the date or time. I’ve been busy squirrelling away, making sure that I started 2015 as dedicated to my personal cause as possible. I’ll admit that the festive season completely ran away with me, so the majority of my time and energy was spent trying to a) stay awake (I have to really fight the urge to hibernate in winter) b) eat as well as I could, given the amount of work related lunches, dinners and parties I had to attend, it was not easy c) control my seemingly uncontrollable psoriasis as much as possible – it too struggles to survive the cold winter months!

At the beginning of 2015 I flew out to see my auntie in Cologne. This was the perfect way to start the year, as I was able to take myself away from my everyday surroundings, from the daily grind of work, the hustle and bustle of London and allow myself a few days to really reflect on last year and think about this year ahead.

I spent five days chilling out, kick starting a cleaner way of eating and generally detoxing from the festive season, whilst continually asking myself what do I want to achieve in 2015, what lifestyle choices do I want to embrace and what habits do I want to kick?

The following five points resurfaced every time I revisited these questions, so at the end of my break I wrote them down in my journal and flew back to London with my 2015 intentions:

Fix my psoriasis – through research and trial and error (all of which I intend to document on here) I will find a way to fix my psoriasis!  

Explore new foods and change my eating habit – the whole purpose for me starting this blog was to explore the health benefits that food and certain diets can offer to psoriasis sufferers and to try them out

Quit smoking – I actually decided to quit on New Year’s Day, and so far so good - 41 days and counting! It certainly hasn’t been easy, but the improvement that I have seen to my psoriasis already has made me determined to stick to it

Travel – I have been unsatisfied in my current situation for a while, and part of this is down to my growing itch to travel. This year I will take the plunge and embark on an adventure

Become more mindful – I’ve been practising yoga for a few years now, and last year I started to explore the benefits of mindfulness and meditation (more on this later). My job is generally high pressured, and London-living can get hectic and stressful. I’ve found that trying to be conscious and aware of the present situation, has really helped me to gain perspective on some things and find ways to deal with them other than through stress

Since returning I have made significant headway with some of the points above (I know, I know, it’s still early days) but things like quitting smoking, focusing on an alkaline diet (more on this later) and completely cutting out meat have already started to show massive improvements to my skin.

I’m learning so much each day, and am excited to get this all written down to share with you all as well as tracking the progress of my psoriasis.

More from me soon :) x

As always, I’d love to hear from you so please do get in touch with any comments or questions. 

What type of psoriasis do you have?

I have been asked this question a few times recently and the honest answer for a long time was… I don't know! 

Psoriasis is just psoriasis, right? Wrong. 

I was recently asked to take part in a survey about my condition, where once again I was asked this question and the different types were listed out in a series of tick boxes... whilst some were pretty obvious, others were not and it shocked me at how severe some were. 

What I learnt was that over the years I've actually had several types of psoriasis, which I will go on to explain below, but it's probably easiest to start at the beginning. 

When I was five I caught chickenpox from a kid in my nursery. As an older sister this was a double nightmare from my mum as Danielle also caught it a few days after. Whilst Danielle was lucky enough to only catch a few spots which cleared pretty quickly, I was covered from head to toe! After a couple of weeks Danielle was back in school but I was still home with an increasing amount of spots. After a visit to the doctor, he told us that he was fairly certain these spots were actually psoriasis and a few weeks later a dermatologist confirmed that it was indeed guttate psoriasis. 

Over the years my condition worsened, the spots grew and joined to make larger plaques, they became red and angry sometimes bleeding and I became more aware of it. It had developed into the most common form, plaque psoriasis. 

At the same time I also noticed patches of psoriasis appearing on my scalp and neck, forehead, behind and inside my ears and worst of all, under my nails. Some research class these as part of plaque psoriasis, but for the sake of treatment I class them as separates. 

And that's where I am now - I currently have widespread plaque psoriasis covering most of my torso and parts of my arms and legs. I also have it on my scalp, forehead, ears and neck and most recently my eyelids, as well as my finger and toes nails. 

So here's what I now know about the different types of psoriasis that I've had and a couple of typical treatments have been offered and have worked - 

Guttate psoriasis often starts in childhood or young adulthood. It appears as small, red, separate spots on the skin, usually on the trunk and limbs. They can sometimes appear on the scalp, face and ears. The lesions do not tend to be as thick as those of plaque psoriasis. This form can precede or appear alongside other forms of psoriasis such as plaque. 

This type of psoriasis often comes on quite suddenly, with known triggers including:

• Upper respiratory infections
• Streptococcal infections  - such as chickenpox and tonsillitis 
• Stress
• Injury to the skin

Suggested treatment: Topical creams (I've tried millions over the years, none have had a lasting effect), Sun treatment (have had two rounds that have cleared it for six month periods) 

Plaque psoriasis is the most common form of psoriasis and appears as raised, red patches covered with a silvery white buildup of dead skin cells or scales (often referred to as scabs). These patches most often appear on the scalp, knees, elbows and lower back. They're itchy and painful, and they can crack and bleed.

This type of psoriasis often comes develops over time, with known triggers including:

• Inheritance
• Sunlight: psoriasis is often much better and more manageable in the summer when exposed to sunlight, and worse in the winter without 
• Stress 
• Streptococcal infections 
• Hormonal changes (particularly after childbirth)
• Smoking and alcohol.
• Trauma - psoriasis may be spread to uninvolved skin by various types of trauma

Suggested treatments: Topical creams (the majority I have been prescribed have been steroid based and whilst they work short term, the cause havoc when trying to come off them) Sun treatment (again, has completely cleared it for 6 month periods but can be difficult to find time to do this around a full time job) 

Scalp psoriasis makes raised, reddish, often scaly patches on your scalp and can often spread to your forehead, the back of your neck, or behind your ears.

Symptoms of scalp psoriasis include; scaly, red, bumpy patches, silvery-white scales, dandruff-like flaking, dry scalp, itching, burning or soreness and in some cases hair loss.

Scalp psoriasis itself doesn’t cause hair loss, but scratching a lot or picking at the scaly spots, harsh treatments, and the stress that goes along with the condition can lead to temporary hair loss. Fortunately, your hair usually grows back after your skin clears.

This type of psoriasis can appear with or without other types, with known triggers including:

• Inheritance
• Stress 
• Streptococcal infections 
• Smoking and alcohol

Suggested treatment: Coal tar based shampoos (I have tried lots over the years, the one that I find works best is Alphosyl 2in1, medicated creams, gels, oils (have tried a few but none have been as effective as the shampoo and are a real pain to wash out) 

Nail psoriasis - psoriasis can affect fingernails and toenails. You can usually spot it easily, but it can sometimes be mistaken for a fungal infection. 

Common traits include; 

• Pitting of the nails - small pits appear on the surface of the nail
• Onycholysis - the nail separates from the skin underneath the nail. At first this looks like a white or yellow patch at the tip of the nail. This patch gradually gets bigger and reaches the base of the nail. The gap between the nail and the skin underneath the nail can become infected and change colour.
• Subungual hyperkeratosis - chalk-like material builds up under the nail. The nail becomes raised and often tender.
• Discolouration of the nail, turning to yellow-brown
• Thickening of the nail 

There are steps that you can take to reduce the discomfort and prevent the condition from worsening, such as; 

• Keeping your fingernails and toenails short
• Keeping your nails as dry as possible
• Protecting your nails by wearing gloves when doing any manual work
• Avoid a manicure of the base of the nail. This may cause an infection
• Avoid false nails or varnish containing acetone as it can cause damage to the nail

Treatments for severe nail psoriasis include:

• Antifungal treatment - this may be required for fungal nail infection if this is also present.
• A steroid injected into the nail - this may be effective for some types of nail psoriasis but it is painful
• Phototherapy (light therapy) 
• Removing an affected nail (in extreme cases) 

So, the next time somebody asks me that question I can confidently say I have several types of psoriasis, each of which should be approached and treated differently! 

Has this been helpful? I’d love to hear your thoughts – please do get in touch!