What is Ehlers Danlos Syndrome?

Hello! Welcome to my blog! To start off, I thought I’d explain what exactly I have.

When most doctors are in training, they will often be told this:

“When you hear the sound of hooves, think horses, not zebras.”

This is done to prevent any misdiagnosis of a rare disease or illness – they’re taught that simplest cause of symptoms must be the correct one. For example, for years I was told I had IBS (irritable bowel syndrome) when my condition was obviously a lot more complex.

Due to this phrase running around in the medical world, it is often forgotten and overlooked that these rare conditions do actually exist and those patients – ‘zebras’ – are usually neglected. Diagnosis and treatment can become incredibly hard to come by and it can sometime take 10-20 years to get a diagnosis.

As Ehlers Danlos Syndrome (EDS) is a rare condition (although not as rare as first thought), we have become known as ‘medical zebras’ and this identity has “now been adopted across the world through social media to help bring our community together” (The Ehlers-Danlos Support UK).

So what is Ehlers Danlos Syndrome then? If you haven’t read my story, then don’t worry. It’s a connective tissue disorder which can affect any part of the body. For me, it is the joints and digestive system that are most affected. My joints can cause me pain or even partially dislocate. My digestive system has become so weak due to the lack of muscular support of my intestinal walls and I have developed three prolapses within my rectum (lovely, I know) – so I couldn’t eat for a year and spent my time sipping nutritional supplement drinks.

So yes, as I’m about to have ileostomy surgery with EDS (Type 3, hypermobility) and haven’t found many others who have been in the same boat as me, I thought I’d start writing this so if anyone else is in a similar position, they’ll be able to learn about my experiences. I am really hoping I will be able to eat again as this surgery will help avoid the ‘dysfunctional’ parts of my digestive system (ie: my colon and rectum). Bonus points if I don’t have to take laxatives anymore! Things with EDS can be different compared to how they normally are (eg. surgery, as our healing rates are slower) – so this is going to be interesting.

Any questions, then please contact me through email on the ‘Contact’ section of this blog!

Charlotte x

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