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, I was en-route to better care.