Support Groups

Hello, I’m Debbie, another Hypermobile EDS’er.

Mam to three and nanny to my granddaughter. Two of my three are diagnosed hEDS my eldest son has many traits however undiagnosed…

I have a life long passion for Old English Sheepdogs (Dulux Dog). My Furry Son ‘Zeus’ is very much a part of our family as well as my very loyal buddy & therapy!

Nothing overly exciting happened to my body in childhood. I dislocated my left knee cap in Junior School and broke my wrist in Secondary school –  just kids stuff.  My school reports were always consistent must try harder / must concentrate more… I don’t think EDS was even discovered back then!

Meningitis kindly invaded my body when I was 20 yrs old. My health began to deteriorate after that. I had a further 22 + years of falling to bits and hitting brick walls looking for answers. All I got was an ever-growing medical history, a pill cupboard as big as a pharmacy and long lists of conditions I couldn’t pronounce let alone spell, for which I was far too young for. In 2015 I gatecrashed my mums Genetics appointments ….twice! The lovely Geneticist took an interest and I was eventually diagnosed by the EDS Clinic in Sheffield July 2015 – Hypermobile EDS.

I can empathise with everyone’s daily struggles with EDS. You/we are not alone no matter how alone and isolated EDS may make us feel.

I know by my lived experience we are frightfully behind in knowledge and understanding of EDS in the Health, Social Care and Education sectors in Cumbria.

I’ve had a few ‘curve balls’ in life so I’m a tad resilient. I’m uni educated to Honors degree in Social Work. I aim to raise much awareness throughout Cumbria. I’m confident the EDS Community in Cumbria will grow. My hope is that a diagnosis should not be the end but the beginning of an empowering journey that enables us to take back some control in our day to day lives and in our wellbeing and that services and support become more accessible to us EDS’ers.

We have this interesting and unpredictable condition for life, it’s not going away so let us do our best to self-manage and be there for each other, together in Cumbria under the care and support of EDS UK.

Gentle hugs,
Debbie

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.