Below is a BRIEF summary of each of the conditions that fall under the umbrella of ‘Ehlers-Danlos Syndrome’ – my primary condition, and the root of all others.
For more in-depth information about any of the illnesses listed, select the corresponding title, or alternatively you can browse each condition in order using the ‘next’ button at the bottom of the page.
Fortunately (or unfortunately, depending on how you look at I don’t know it!), the illnesses from which I suffer laid dormant throughout all of my childhood and early teenage years; the onset of my symptoms presenting just 7 years ago (aged 16), and only piecing together the symptoms into a formal diagnosis (and then several diagnoses) just a few years after that.
Although looking back there’s been some ‘warning signs’ throughout my childhood, there’s never been anything visible or ‘out of the ordinary’ when compared to the ailments that any other child of my age – only the ‘normal’ injuries; landing at a dodgy angle on trampolines, jumping into swimming pools at the shallow end with my legs locked straight, and not beîng able to catch a ball properly because I’m the least sporty person I know!
My (primary) medical conditions
My primary (or ‘umbrella) diagnosis is: Ehlers-Danlos Syndrome (EDS).
- EHLERS-DANLOS SYNDROME
There are endless amounts of possible symptoms that are linked with EDS, and sometimes the answer to all of the ailments we have is “just because”. The symptoms I suffer as a result of EDS exclusively are focused on my joints and their laxity, causing at least 10 joint dislocations (most commonly of my shoulders, jaw, fingers, wrists, elbows and knees).
My (secondary) medical conditions
I suffer from multiple co-morbidities (also known as secondary conditions), The physical conditions/symptoms in such a case includes: –
- Postural Orthostatic Tachycardia Syndrome (PoTS)
- Bed bound in a completely horizontal position due to fainting and/or seizures.
- Hoist to reduce the risk of dislocated joints.
- Mast Cell Activation Disorder (MCAD)
- Tracheostomy to ensure a patent airway during the frequent tongue and/or throat angioedema, and severe Anaphylactic Reactions.
- Gastroparesis & Intestinal DysmotilityI have a Rig-J (or Gastro-jejunostomy). This means that all of my nutritional needs are met by a feed that runs into my jejenostony (top part of bowel).
- I also have a drainage bag connected continuously to the ‘Gastric port’, to drain my stomach contents, which – in turn – reduces my pain and nausea/ sickness.
- Chronic Urinary Retention & Interstitial Cystitis Reliant on catheter to drain urine
- Suprapubic/urethral catheters (through a stoma made directly through the skin, or via the urethra.
Although not directly related, I also suffer from (and am continuing to develop) health complaints that have occurred as a result of the primary (or even secondary) conditions. Included in that category is:
- Anaemia caused by iron deficiency.; the result of malabsorption of iron in the gut, and exacerbated by certain medications, as well the original chronic conditions too.
- Osteoporosis/Low bone density, which has been caused by a 7 year long course of high dose steroids – Prednisolone; prescribed initially as an attempt at reducing inflammation within the body.
- Cyclizine Dependancy – an anti-emetic that was used intermittently during acute admissions to hospital. The problem occurred whilst the long awaited admission was started (and continued to be given at home) for a dental infection that resulted – eventually – in full dental clearance. During the year it took for the doctors to make that decision, I was being treated with antibiotics that made me sick, but attempted to be controlled with Cyclizine. Over such a long period of time, however, it naturally became less effective, and as a result, the dose gradually had to be titrated up. The dependancy became clear when stopping the Cyclizine post-op, when it triggered seizures (that I still am currently having, twice per day. The toxicity level (although different in everyone) is more than 3 doses per day.’c yet I found myself needing 5 to 10x that amount. Every hospital (and other centres) were approached and an elective admission for ‘detox’, but all were unwilling to oversee this detox-like process; using lack of literature, recorded trials, case studies or research reports as their reasoning/excuse. However, I am writing this from ITU – where I wa admitted as an emergency for another bought of sepsis, and I’m fortunate enough to have been given the chance at reducing the Cyclizine in the unit, and so here I am! You can follow my progress by viewing my ‘Detox Diary’.
- Recurrent Sepsis – a severe and life-threatening infection (the severity – in general – not often fully understood). The infection, in sepsis, has made it’s way into the bloodstream, as opposed to remaining localised to a single area in the body like it would do in a regular infection (like the chest, for example). The risk of turning ‘septic’ is increased massively where there is a direct ‘entry point’ for bacteria to enter the blood stream (as my Hickman line does), and although not ideal for anyone to have a long term IV line, it’s a life-line for a lot of people, and so it’s a case of assessing risk vs. benefit on an individual basis. More often that not, the decision is taken away from us as patients, as there is no alternative. For so many people, it’s the only viable route in receiving medication, and for some, to receive their nutrition when the gastrointestinal system doesn’t work efficiently enough (known as ‘TPN’).
I’m a firm believer that the body and the mind cannot be separated; mental illnesses incur physical symptoms, and physical illnesses incur mental illness.
It’s only recently that my mind has started to catch up with my physical conditions and so (just in case I’ve not used enough of the NHS’ money already!) I’ve also been diagnosed with:
- Severe Anxiety
- Post Traumatic Stress Disorder (Specifically ￼post-ITU stress disorder)
However, I’m more than a list of medical conditions, and even though at the moment, life isn’t quite going to plan, I’m not in any doubt that everything happens for a reason..let’s just hope it turns out to be a good one!