Great North Run 2024

Get a cuppa, as it's a canny read,.....soz ;-)
We are running the GNR jointly for Young Lives Vs Cancer -YLvsC (page link) and Ehlers-Danlos (Eds) Support Uk-EDS (page link)

Why though........

Hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum disorders (HSD) are one of the 13 individual types of this really crappie, chronic and life altering condition. All are genetic conditions which effect the bodies connective tissue in different ways. Connective tissue lies between other tissue and organs, keeping them separate, whilst also connecting them.  The role  (of connective tissue) is to support, and hold everything in place like bricks and mortar. In EDS, a gene mutation causes a more stretchy, fragile type of tissue usually in the form of collagen.
I have the Hypermobile type; meaning for example that my joints, muscles, and tendons are prone to injury, dislocations, crazy bruising, lots of laxity and a shed load of daily chronic pain/fatigue and discomfort.  Lots of tissue just doesn't quite do its job right.  There are now only fleeting episodes of time when I am not in some sort of pain 24/7. Relief comes when unconscious ha ha, or when I am wired up to a lidocaine pain drip at times, for a moment of emotive magic/ease, when I get to bitterly-sweet remember the feeling of no pain.  I still can't decide if this is good or bad....... But luckily, I also get some relief, if my mind can be absorbed and distracted by an activity, or a sport, or if raving on radge :-)

All of these lovely characteristics bring their own special co-morbidities body wide. The mind and body are affected via a range of systems and dysfunctions.  Naturally this can impacts on general attempts to live a "normal" functioning life with a sometimes hidden and fluctuating disability. EDS UK offer free support, and fights our cause, where challenge is needed for better.  Attending local support groups has allowed me to have a better understanding of the condition, and to start to come to terms with our reality. I am building a lovely little support network with people who "get it".

"Nobody should be left to fight on their own. Every person with EDS & HSD should have access to the appropriate medical services and care they need.  This is why we are here, and this is what drives us to work each day. To offer support to anyone touched by Ehlers-Danlos syndromes" -EDS UK

YL Vs Cancer
For me, all of the above doesn't come anywhere close to how young people and families are touched and effected by Cancer.  From the moment of diagnosis (and the journey before for lots); in treatment and beyond, life with cancer is utterly S*i*! As a Social worker (at the RVI and Freeman hospitals), I get the absolute PRIVELAGE to walk alongside young people and their families when they can still laugh, when we cry and also when they die, on this unimaginable journey.  Young Lives help families find the strength to face everything cancer throws at them.  It aims for children, young people and those all around them to Thrive and not just survive!  YLVsCancer are Brave, bold, and ambitious to fight for better equity and care where the justice is still needed.  They fight for all 0–25-year-olds effected by Cancer, and we also support those with similarly impacting conditions, for example those needing a bone marrow transplant for a range of diagnosis.

Thanks so much for having a look around here, and getting to the bottom...(nearly!) :-)
Have a look at both websites as there is an abundance of ways to get involved in each cause.  Pennies are always needed and of use, but please don't feel pressured to stretch yourself too far, or in that way.  Come and volunteer with us at YL , or float it by your boss for a team effort/volunteering day or pledge (?). ....Could you raise awareness for rare conditions like EDS /HSD by simply being curious to understand and ask more? 
Most important to me, help me celebrate the amazing young people who are still fighting, who have gone on to survive & thrive, despite all they have had to experience and had taken away from them by sharing the cause and successes.  And we always celebrate and remember those extra special young people, that families (and the world) have lost, after brave battles they unfairly had to fight :-(
They all teach us so many lessons about living, "lifeing" and connecting with consciousness for the wider community

P.S you can also "donate" in massage, therapy, training with us, Kinesiology tape, motivational chat/tips & laughter to get me even through the training in one piece.

The gorgeous soul that is (Dr) Ruth McGovern, "agreed" to help this cause and is smashing it already in her efforts.  This lady ceases to surprise and motivate me in all she achieves in life.  Anything she puts her mind to, is pretty much a given success. And she has biggest heart/compassion/amount to give available.  One of life's true LEGENDS :-)

Eternally thanks
Hayley, Ruth  (and any others we rope in) x x