Ehlers Danlos Syndrome (EDS), my primary diagnosis, is a connective tissue disorder. The syndromes have recently been re-classified and thirteen different types identified; my diagnosis is Hypermobile Ehlers-Danlos Syndrome or hEDS.
The multi-systemic symptoms that arise in EDS patients are due to defective collagen; collagen is the most abundant protein in the human body and is found in structures such as muscles, bones, vessels, tendons and skin. It’s prevalence is what makes the impact of EDS so devastating and widespread. EDS is thought to have a genetic component, although fortunately no one else in my family is affected.
There is such little awareness of EDS, a diagnosis can be hard to get and often takes a long time. There isn’t one EDS specialist, instead I see the various consultants of different specialities for each of my problems, but this makes coordination of care difficult, leaving me spending most of my time, when I am not at appointments, chasing up things and trying to pull areas of my care together.
There are numerous secondary conditions that frequently occur alongside EDS including Mast Cell Activation Disorder (MCAD) and Postural Orthostatic Tachycardia Syndrome (POTS). I have diagnoses of both of these, my POTS impacting my life more significantly than MCAD. Please follow the links to the pages on the respective secondary conditions to find out more.
EDS manifests itself very differently in each individual; in my case I struggle with the majority of my joints dislocating and subluxating on a daily basis, my bladder doesn’t work so I have to self catheterise, my bowel doesn’t work so I carry out irrigation whilst I await an ileostomy, I’m losing my ability to swallow and I don’t absorb very well, meaning that numerous of my medications are ceasing to work and I have various deficiencies such as Potassium which I have to take supplements for.
EDS, like many other chronic illnesses, is extremely cruel and has stripped me of all normality and things that I would have otherwise taken for granted. However, I have EDS and EDS doesn’t have me and as much as I have control over this is the case. At the moment, my aim is to get back to Cambridge and complete my degree; it won’t be easy, it won’t be without carers, wheelchairs, medications etc, but it’ll be my new version of normal and I will get there somehow.
‘Your illness does not define you, your strength and courage does.’