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 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