Action for Ehlers Danlos Syndrome Scotland

10/02/2024

There can often be misconceptions associated with MCAS, especially as it is such a complicated condition to understand and manage. Do you know your MCAS fact from MCAS fiction?

10/02/2024

I don’t know about you but I don’t like being called a zebra….. I don’t like calling people with eds zebras.

For me it highlights the fact that most doctors are still so neglectful about this condition

It really highlights the downplaying happening in medical schools far and wide across the world ( and especially in Scotland!) that in this day and age doctors will still scratch their heads when someone has the most obvious set of symptoms to fit in with a connective tissue disorder…

The same can be said for mcas
The same can be said for pots
The same can be said for fibromyalgia
The same can be said for ibs
The same can be said for endometriosis

……. Do you really think they didn’t know it was something bigger? “They” being the ones who decided what and how medicine was taught to this generation of doctors…….. they knew!

So being called a zebra only reminds me that they ruined our lives and continue to do so with a serious lack of education and understanding amongst some of Scotland highest paid consultant doctors 👀

Shame on you! NHS Scotland

10/02/2024

The care for eds in Ireland is abysmal they really have it rough, please follow and support irelands push for better care ###x

"I was about 12 or 13 when we first started going to doctors about a mix and match of different symptoms I was experiencing. I was in a minor car accident a few months previously and the symptoms of chronic pain, fatigue and laxity in my joints never went away.

"It was a very hard puzzle to put together. And it was quite a struggle, not knowing what was going on in my body, and not knowing what was causing these things.

"I managed to just complete first year in secondary school, and I’d say I maybe did three days of second year, before I ended up bed-bound and wheelchair-bound.

"I was officially diagnosed with Ehlers-Danlos syndrome (EDS) at 15. My mum was diagnosed with the genetic condition not long after.

"EDS affects collagen, the ‘glue’ holding the body together. My symptoms include joint hypermobility and skin hyperelasticity. People with EDS can also have very fragile skin..."

Ciara Micks is 22 from Ennis, Co Clare. Read her story of living with Ehlers-Danlos syndrome (EDS) in the comments below.

03/02/2024

This is my Instagram page. Soon everything will be under the organisation name …….. if ever I can decide on one…. Perhaps I’ll do a poll!!

26/10/2023

So it would seem someone has an issue…. If you have any decency perhaps come to me first instead of facebook….. although I completely understand if you don’t want to do that…. Cowardly pathetic behaviour usually doesn’t bring decency to the mix 😉 it’s ok tho I don’t mind I’ve a new page a website in the making 😘

29/06/2023

Me all night

18/05/2023

'What you see, What you don't.' ⁠
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EDS and HSD can affect many areas of the body, often at the same time.⁠
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You may see someone using mobility aids and recognize a visible disability⁠. ⁠You may also see someone and not see their disability. They may have a non-visible disability. ⁠
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Having a non-visible disability can affect someone’s life as much as a visible disability. ⁠
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⁠A person may need mobility aids all of the time. A person may need a mobility aid some days, but not others depending on their symptoms. ⁠
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⁠A person’s symptoms may fluctuate in severity on some days, requiring more support, rest, or mobility aids than on other days. ⁠
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Someone may see you socializing, at work, or at school, and not see symptoms of your EDS or HSD. They may not see the days with fatigue, pain, and other symptoms. ⁠
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Describe what people may see on the surface, but what they don’t often see you going through. ⁠