EDS UK – Support for People with Connective Tissue Disorders

“Nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care.” – EDS UK

“These cookies are AMAZING” – Me after barely a bite!

It took over a decade of back-and-forth doctors appointments to get my diagnosis of the rare condition Ehlers Danlos Syndrome (EDS). This isn’t an unusual story for others with EDS – it often takes this long to find out what is really happening, with symptoms often being dismissed or misdiagnosed. The Ehlers Danlos Syndromes are a set of thirteen separate genetic connective tissue disorders. Having one of these conditions means that the glue of our bodies is not working quite as it should – this causes dislocations and partial dislocations, chronic pain, fatigue, gastro-intestinal issues, chronic migraines, and an ever-lasting list of other symptoms which span the entire body and affect us on a daily basis (yay!). The type of EDS that I have does not explicitly affect my life expectancy, but, sadly, this isn’t the case for all types. Which is all the more reason to support this charity and the valuable support and research it provides. And what better way to do this than by treating yourself to some love-filled sweet treats through MoMa’s Cookies?!

Having EDS means you are also more likely to have secondary conditions such as Postural Tachychardia Syndrome (PoTS), small fibre neuropathy, chronic fatigue, and cervico-cranial instability. This can often take a toll on our mental health. It is tiring, and often feels lonely. But Ehlers Danlos Support UK have support groups across the UK full of people who understand what it is to live with this chronic health condition. The first meeting I went to – which was a talk about how to safely move our bodies, taking into account our pain and susceptibility to injury – I sat on the verge of tears for about an hour. Finally, I was in a room of people who understood – who knew.

“With awareness and early diagnosis we can change lives.” - EDS UK

I’d spent years of my life pushing my body to the extreme as a Karate practitioner, physical theatre artist, and occasional hiker. In my first year of university I could hardly climb stairs for weeks as I’d (at that time) inexplicably injured my knee. After climbing Snowdon, the next morning I had to move my legs with my hands as they simply couldn’t manage. Now, I realise I was pushing my body to its brink, and I needed to be more patient with it.

MoMa’s Cookies allowing me the chance to fundraise for a cause so important to me just reinforces how community-focussed and ethical they are. By teaming up with each other, not only are we increasing awareness of this condition, but also offering a platform to raise much-needed funds for EDS UK’s work. And might I add…. These are the BEST cookies (and I’ve done the research…). I may have already tried a fair few flavours and they are all packed full of deliciousness, comfort, and a whole lot of love. In fact, #threecupsoflove!

EDS UK offers courses, meetings, advice, resources, and a helpline for people with EDS and those who care for us and love us, as well as medical professionals (as EDS is an often unacknowledged condition).

I have accessed talks, support groups, mindfulness courses, and resources which have truly helped me cope with realising that I will live with this difference for the rest of my life. After a decade of knowing there was something clearly wrong with my body, I couldn’t help but feel I was making it up. But now I know that my pain is valid, my symptoms are real, and that there are things I can do to help manage it. Finding out you have a life-long genetic condition can feel like you’re mourning the life you imagined for yourself. EDS UK has helped me realise that this isn’t the end of that future, but the beginning of negotiating a slightly different way of getting there.

Thank you to MoMa’s Cookies for being so embracing of all of the incredible causes fundraised for so far, and paving the way for more advocates to fundraise for other incredible programmes, charities, and groups. Grab yourself a sweet treat, get yourself a discount, and donate to a worthy cause all at once!

To find out more about the work that EDS UK do, please

To contribute towards Lydia's Programme, use discount code: LydiaMoMas20 upon checkout

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