January 2019

The year began on January 2^nd with a visit to Manchester after being invited by Matt Eagles to the Havas Lynx Pride event to celebrate the work its patient advocates had been doing.  There were many people who got up on stage and spoke, read poetry, a bit of comedy and some just described how their illnesses affect them and there was even a bit of music performed by “B Positive Choir”, who got through to the final of “Britain’s Got Talent” in 2018. They raise awareness of Sickle Cell Disease and the need for people to, ‘please’, give blood as their donations could help to save the lives of people with the disease. Working in support of the NHS Give Blood Campaign.

A perfect place to network, enjoy a few nibbles and catch up with fellow friends from the world of patient advocacy.  I met many new people as well and it was interesting listening to their journey’s with their advocacy and health.

Sadly, my health was ‘pretty’ bad during the course of the day causing me tremendous pain and I’d had very little sleep the night before because of it.  This is what people don’t see, the bit where I struggle to get through the day regardless of the pain, all they see is that I’m up, about and not laid up in bed at home being miserable and disabled.

During the months of January, February and March I was a selected member of the steering committee for the ‘Im-patient’ conference which was to be held at the eyeforpharma Barcelona Conference in March 2019. You can read more detail about the events themselves during the March section of this report.

I was on the committee with several other selected patient advocates – Matt Eagles, Alan Thomas, Elly Aylwin-Foster, Candace Lerman, Andrea Ruano Flores and Brigit Bauer. Our jobs were to work together to design and implement the conference with our eyeforpharma guide and advisor James Mackintosh.

It was an honour to be a part of the team designing the event which happened as part of the eyeforpharma 17th Annual exhibition & Awards conference in Barcelona 12th – 14th March 2019.
Being a founding member / supporter of ‘Im-Patient’, which was born from an idea developed on one of the round tables that I facilitated at the ‘eyeforpharma’ Barcelona conference in 2018, it also made it feel quite special to be working with my peers to design this event for pharma one year on.

eyeforpharma article

FibroFlutters sister groups 25^th birthday

In February it was FibroFlutters ‘sister group’ the Sunderland Fibromyalgia Support Group‘s, 25^th birthday and we attended along with representatives from several Fibromyalgia Action UK support groups from around the North East UK.  A fabulous celebration with a great atmosphere amongst many fibromyalgia patients. 

Again ill health was plaguing me and in fact I very nearly didn’t make it to the party because of the pain being caused by one of my chronic conditions that affects my bowel disorder and sees me writhing in pain for anything from 1 to 8 hours depending on the seriousness of it.

However, despite being really ill leading up to it over the weekend I got up, dolled myself up and went to party. It was a great afternoon as the photos show you. A fabulous milestone for Sunderland Fibromyalgia Group to reach.

It was a wonderful couple of hours with fibro friends friend from four different regional groups. We laughed, we ate buffet and cake, had a raffle, and generally had a wonderful time. Even me, as you can see!

Afternoon tea with Tyne & Wear Fibro group

On 8th February I was invited along to the Fibromyalgia support Tyne and Wear Group’s afternoon Tea-Party, by FibroFlutters Founding Five Member Elaine Hanson who attends the group and helps to admin their Facegroup group.

It was a jolly few hours and gave me the opportunity to meet a few new fibromyalgia sufferers from within the North East UK. It’s funny really because we do know each other from attending other groups, but mainly from being online and being members of other North East Fibro Facebook groups. It’s not easy to meet up for regular monthly meetings due to the illness causing problems, or the fact that setting a time that everyone can attend is ny-on impossible. I speak from FibroFlutters experience!

A perfect chance to talk about our ailments, general lives and how we’re all coping, or not coping and ask each other for advice and whilst enjoying the wonderful spread that you can see in the pictures. A fun bunch to spend a few hours socialising with!

Rare Disease Awareness Day

It is also Rare Disease Awareness Day in February which I endeavour to support the best that I can.  With my decision to slowly build FibroFlutters organically rare disease is relatively new to our portfolio and support system so this year our efforts weren’t homebased. 

Next year in 2020 I hope that FibroFlutters can take a more active role in raising awareness as a group.  I have several musculoskeletal based rare diseases and my Co-Founder Vicky Green has got PVNS which is ultra-rare.  We both have EDS as do a few other of our followers and members, but there are other rare diseases amongst us all too so getting involved will be something that I am eager to achieve in 2020.

In 2019 time was spent campaigning across our social media channels for varying Rare Disease associated charities.