My journey with Ehlers-Danlos Syndrome

Dear customers & friends,

My journey to discovering my Ehlers-Danlos syndrome (EDS) was a slightly protracted one…I first started complaining of leg pain when I was about four years old. I would constantly trip over my own feet. I  would often wake up in the night with joint pain and was even kicked out of ballet classes for being too stretchy and ungainly! All my joints bent backwards and I could perform all sorts of ‘party tricks.’ I had countless doctors tell me there was nothing discernibly wrong with me apart from my hyper flexible limbs. It wasn’t until I was pregnant with my first daughter and under the counselling of a geneticist (due to my ex-husband’s childhood cancer) that I was diagnosed with Ehlers-Danlos syndrome, predominantly on the hypermobile spectrum (hEDS).

As I started researching this strange new diagnosis all my childhood issues slowly came into focus. Not just the hyper mobile joints, but the clumsiness, the fatigue, the heart palpitations and dizzy spells (I also suffer from OI and POTS) the bruising and scarring. It even explains my weirdly downy and stretchy skin.

So, why am I choosing to talk about this right now? Well, for a start, May is EDS awareness month and sufferers are being encouraged to share their experiences. I also feel like now is an important time to share my EDS story, as my symptoms have been getting worse and are now starting to considerably affect my ability to work.

I used to be able to manage my symptoms with lots of anti-inflammatory drugs and a little bit of stubborn determination. However, due to recent allergic reactions, I seem to no longer be able to tolerate anti-inflammatories. I am increasingly experiencing lots of pain at the bench due to the postural demands of making jewellery and need to take longer breaks between working days to allow my muscles and joints to recover.

Unfortunately, this is inevitably leading to delays in my commissioning work and a reduction in my productivity. Working and parenting with a chronic illness is challenging and as I’m getting older I‘m struggling to meet that challenge! So, if you see a little less of me around the Topsham shop, it’s because I’m having to take more breaks, and spend a little more time at home with my kids.

Best wishes,

Erin Cox x

(your slightly too stretchy jeweller)

P.s. To learn more about EDS click here