Amanda Tomlins

Well, yesterday was a bit of a shitshow. I fell out of my wheelchair, hurt my foot and landed rather spectacularly on my arse. Not ideal, but hardly worthy of a medical emergency…. except less than ten minutes later, I was unconscious and being blue-lighted into hospital. I know. Whopper. It wasn’t because of my foot, mind you… Nooo. It was my adrenal glands. I have something called #AddisonsDisease which means those two little glands above your kidneys don’t produce cortisol. And if you didn’t know, cortisol is rather bloody important. As in, you literally cannot stay alive without it. So… I take steroids every day to do the job my adrenal glands have apparently resigned from.  The trouble is, when healthy people get injured, ill or stressed, their bodies automatically produce extra cortisol. Mine? Nope… nothing. “You’re on your own, love.” Aaaand suddenly a little tumble becomes a life-threatening adrenal crisis. Blood pressure plummets, consciousness disappears, and without an emergency hydrocortisone injection, things can go very badly wrong rather quickly. But here’the really upsetting part. The life-saving injection we need to use, isn’t ready to use! Nay nay nay… no speedy pen, or pre-filled syringes here. You have to open a little glass ampoule of sterile water, draw the liquid into a syringe, inject it into a separate vial containing powdered hydrocortisone, gently mix and WAIT until the powder dissolves, then draw the medication back into the syringe. After that, you need to fit the appropriate IM needle, prepare the injection site and inject it deep into a muscle, usually your thigh. All whilst vomiting, shaking, and usually losing consciousness.  I mean, who on earth thought that was a sensible idea?! I’ve got to a point now, where I’ve resorted to preparing syringes in advance, despite knowing the risks, and the reduce efficacy… because something is better than nothing. And let’s face it… when you’re partially unconscious, your chemistry skills are somewhat limited. All joking aside though, the sobering reality of this is that research suggests around 1 in 200 people with adrenal insufficiency die from adrenal crisis each and every year. A statistic that should enrage us. I’m not telling you this for sympathy. I’m telling you because we desperately need as much awareness to campaign for safer emergency medication that’s actually easy to administer in an emergency. I was lucky yesterday. I got the treatment I needed, and I’m still here to have a good moan about it. But not everyone gets to tell their story afterwards. I wonder how many people have died with everything they needed to survive sitting right beside them. #AddisonsDisease @AddisonsUK