I’m Katie, I’m 24 & I now live in Brighton. My main hobby is my blog (and the associated not-for-profit projects).
From a different perspective, I am studying for a degree in Law via Kent Law School, at the University of Kent. Going to University was a given since the first day of Secondary School. I’ve always enjoyed learning, and I stumbled across my passion for Law by mistake, it being my ‘wild card’ when choosing my A Levels.
As a side note, had it not been for the understanding, empathy, and thoughtfulness that Kent Law School have kindly demonstrated from the moment I was offered (and accepted) a place in their uni, to the minute I moved back home, I would have given up my degree altogether. Instead, they went above and beyond to give me chance of completing my degree with them via distance learning, and this is what I am continuing to work on still today.
I also have a kitten called Missy (well cat; she's 2, but she’s still my baby!). I just love her more than anything in the world (and that’s saying something coming from me; someone who had no passion at all for animals despite growing up around them!). She sleeps in my arms like a baby each night, has tried every treat and has every variety of toy she could ever need, and with 4000+ photos of her on my phone, she’s quite possibly the most spoilt cat in the world!
I am lucky enough to have a the best carers, best friends, and carers who have become friends too – all of whom have become an integral part of my life that I would now be lost without. It is still taking time to accept and admit in my own mind that this is my new ‘norm’ and has rapidly become ‘life as I know it’; a realistic idea of what’s achievable for me, and it being a massive change from my plans originally. 
However, I live by the mantra that ‘everything happens for a reason’, and I have so much respect, appreciation, compassion, and inspiration for both my family, my friends, and my carers, who have stuck by me and got me through the worst times.
It wasn’t until I was 16 that I became unwell unwell. I say that because beforehand, I can’t deny being that moaning child who always had a sick note with them to sit out of P.E. for one reason or another, and wasn’t allowed to play on the grass at lunchtime because of hayfever.
All-in-all, up until the age of about 12/13, there were no real concerns about my health (and it was then that I developed oral allergy syndrome – the first of my ‘allergic’ conditions).
When I was 16, my symptoms began initially with ‘severe allergic reactions of unknown origin’ (also known as ‘Idiopathic Anaphylaxis’). With no obvious identifiable trigger to my reaction, and at the time not having any known allergies, I was prescribed an Epipen by default (an auto-injector of adrenaline to counteract the life-threatening reaction of Anaphylaxis), and hoped it’d never happen again.
It soon became clear that the initial reaction wasn’t a single event as hoped. At the start, however, the reactions came at random; the frequency completely sporadic. It didn’t take long, however, for the reactions to become more regular and a pattern start to form. The gap between episodes began to close in and become less and less, until I was essentially bound to ITU.
By then, I still didn’t even have a real diagnosis – just a name for my symptoms – and a multitude of treatment options were tried; from Vitamin C supplements, all the way through to chemotherapy and post-transplant anti-rejection drugs, all with very little effect (apart from awful side effects) and completely no success in terms of improving my health.
Desperate for answers, we travelled travelled up and down the county to see both private and NHS Doctors, searched anywhere and everywhere for the allergen/trigger (even going as far as moving schools as a precaution (ensuring the cleaning products etc. wasn’t the cause) yet the reactions carried on, the remainder of my health also deteriorating and new symptoms appearing.
Around the age of 18, everything took a turn for the worst, leading to yet another admission to Intensive Care (coincidentally being the worst one to date!). This time, it was via an emergency ambulance to St. Thomas’s hospital in London, where the majority of my consultants were based. There, I was intubated and ventilated until I was medically stable; the swelling had reduced, and my observations were back to normal.
During that admission, I was moved between ITU, HDU (High Dependancy) and the Respiratory Ward more times than I can remember that admission; various medications/treatments were attempted but failed (including c1 esterase inhibitor and Icatibant). The best clinical treatment they could offer, (and the result that we had no other choice than to accept), was discharge home, using 2 Epipens daily as part of my routine medication.
Failing to work, I was re-admitted less than 2 weeks later, and with every avenue explored by way of medication as a treatment, the decision was made to place a tracheostomy; the idea being that it bypassed all swelling above the tube, so I still had adequate air entry during reactions, and to secure my airway.
Still no further forward in finding an answer to these medical symptoms, I was developing new, severe allergies by the day, to an increasing number of drugs, foods, scents, but also triggered by all different factors too.
Amongst an array of tests and scans, my immune system had been significantly weakened; both inevitably (a result of being chronically ill in itself), and ‘purposely’ by being given drugs to dampen down my body’s response to – what my immune system mistakes as – ‘threats’ (presenting as allergies).
In the midst of everything that was going on, I had stomach pain and distension that didn’t take precedence until later on, when it got too severe and I was hospitalised.
An appendicectomy didn’t help, but with worrying clinical presentation, I was taken as an emergency to see Prof. Aziz; neurogastroenterologist at the Royal London Hospital.
Thorough questioning of past medical history, combined with clinical tests (the Beighton & Brighton test), blood work, scans and a family ‘wellness’ history too (where there is a strong autoimmune link), I was diagnosed with Ehlers-Danlos Syndrome.
Various referrals were then able to be made, and I went on to getting a diagnoses - alongside EDS - of PoTS, MCAD, Gastropresis & Intestinal Dysmotility, Bladder Dysfunction, and some diagnoses that are related to my mental health (anxiety, post-itu PTSD, and depression in particular).
My medical conditions
My primary (or ‘umbrella) diagnosis is: Ehlers-Danlos Syndrome (EDS).
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). I suffer from multiple co-morbidities (also known as secondary conditions) to EDS also, 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 Dysmotility
- I 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/Bladder Dysfunction
- Reliant on catheter to drain urine
- Suprapubic/urethral catheters (through a stoma made directly through the skin, or via the urethra.
- Urostomy is the next process I am going through.
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.
- Recurrent Sepsis – a severe and life-threatening infection (the severity – in general – not often fully understood).
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
- Depression
- 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!
My newest venture is to write a book about my journey so far and tell people how the past 10 years have REALLY been for me, and although it’ll take me a while (especially whilst juggling university too), I’m excited for this project.
My boyfriend and I also have a joint blog (www.sam-katie.blogspot.com), and a related Etsy shop selling personalised keychains. Our shop is called ‘CustomisedKeychains’ and can be found at https://etsy.me/2ZH3kFJ
