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Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients

‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday

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A newsletter cover picture for morning editions

What a way to celebrate our newsletters 1st birthday!

On New year’s Day I drove my chair onto the train and headed to Manchester where the next day I would attend a celebratory healthcare event being held by Havas Lynx.
The fact that it happened to be the first birthday of my health related newsletter, which has transformed from sharing just a few online magazines and paper-li’s into a mini-magazine for everyone and #notjustpatients, was just pure coincidence.

Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. Apart from that it gave me the perfect opportunity to take my first ‘solo’ journey since requiring the wheelchair, so coming up 6 years. I’ve always loved travelling about and enjoyed the independence of it but since being reliant on a chair I have always required someone to be with me. Taking this short trip by myself was to prove to myself that I could do it. Naturally, I still needed help from many other people along the way, but I got there in one piece, and back again!

Kudos! to Transpennine Express for looking after me, they always have done and this time was of no exception.

Havas Lynx

Celebration of Healthcare event | 2 January 2019

What a fabulous way to bring in the New Year and to celebrate the great work that goes on within healthcare industry and by HAVAS LYNX. Quite a lovely way to spend the first birthday of our newsletter too with an award winning Health Comms business and a very friendly bunch of folks. The event was split over two sessions with a rotation of Havas Lynx Group employees.

B-Positive’ a choir that recently made it into the final of Britain’s Got Talent – YES, Manchester, 2nd Jan 2019

It was an event featuring a number of inspirational presentations and performances from a variety of awe inspiring guests. Speakers included a variety of influential patient & healthcare advocates including ‘B-Positive’ a choir that recently made it into the final of Britain’s Got Talent. They advocate for people to give blood and the reasons why it is important to register and give a helping ‘pint’ now and again. They even advocate to those of us who are unable to donate to join in with their awareness drive as that is also a huge part of getting people to register. Many of the choir members have ‘Sickle Cell’ or other blood related disorders and boy! they can’t half sing!!

I felt the tingles run along my spine and my hair prickle on the back of my neck, amazing to hear them live like that, and also during such an event celebrating the work that people do within the world of healthcare to try and better the lives of patients.

You can read all about B-Positive via the following link

The B Positive choir, created by NHS Blood and Transplant, is made up of people whose lives are affected by the lifesaving power of blood.

Follow them on Twitter

Another performer was blind poet David Steele who is also the Author of the Stand By Me RP books and is a proud ambassador for Henshaws, and, ‘Two Blind Brothers’ raising awareness for those affected by sight loss. David has Retina Pigmentosa (RP) which is a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina—which is the light sensitive tissue that lines the back of the eye. Common symptoms include difficulty seeing at night and a loss of side (peripheral) vision.

It is really difficult for David knowing that his son is likely to develop the disease with it being a genetic disorder and for the first time he read one his pieces of poetry in front of his son, hoping that he wouldn’t get upset by it. A close family unit fighting a difficult and frustrating eye disease. David has a wonderful Guide Dog called ‘Christopher’ who goes on stage with him when he performs and when the audience applauds he stands up all present and correct. A great man to listen to and to support.

David & Christopher

The following link takes you to where you can read and find out more about the condition

Retina Pigmentosa

Emma Campbell also read some of her book and spoke about her fight with cancer and how she embraced the treatment because she wants to survive. Her epic battle with it, the fear of death and leaving too soon coupled with the fear of it returning. A very determined and positive character who easily inspires others.

All That Followed: A story of cancer, kids and the fear of leaving too soon Paperback – 9 Aug 2018

by Emma Campbell

The poet who opened the performances was Hussain Manawer a fabulous advocate for mental health. He was inspired by a school teacher who urged him to enter a poetry competition, it’s now a decade or so later and Hussain Manawer now travels around with his poetry show ‘The Root of The Pain’.

Hussain has captured the hearts and minds of many with his poetic words and influenced many with mental health problems, encourged them to engage and talk. He has really inspired other men to come forward and speak about their problems and see the support that is out there for them, such as with the ‘lad bible’ campaign.

Hussain did recite this piece of poetry but this is not the video of it.

All in all a very special few hours with many amazing guests who were just there to watch as well, including many fellow peers from the world of advocacy.

Compered by Matt Eagles Head of patient engagement at Havas Lynx EU

Matt Eagles

Many thanks to Matt & HAVAS LYNX for the invitation, and also for covering my travel and accommodation expenses. The team were fabulous at looking after me too on the day of the event, then offering all kinds of support to myself and FibroFlutters. It is an honour to be on their radar, and also an honour to be working alongside Matt for the Impatient Steering Committeee for the Barcelona conference in March. Plus, it was great to see eyeforpharma chairman Paul Simms amongst the guests.

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