Living with MODY – By Steph Normoyle
When most people hear the word ‘diabetes’ they tend to assume that you have to be either fat or ridiculously unhealthy in your diet to have it.
Well mines not down to either of these two factors – it’s genetic.
My name is Steph, I’m a 23 year old from Watford, Hertfordshire and I am a MODY diabetic. MODY stands for Maturity Onset Diabetes of the Young. This is a rare form of the condition which runs strongly in families and is caused by a mutation (or change) in a single gene. If a parent has this gene mutation any child they have has a 50% chance of inheriting. If a child DOES inherit this mutation, they will generally go on to develop MODY before the age of 25 whatever their weight, lifestyle ethnic group etc.
Strong family history? Well my Great Grandmother, Grandmother, Mother, myself and lately one of my younger sisters aged 15 – so check!
Diagnosed before the age of 25? My mother was diagnosed at 7, I was diagnosed at 12 and my sister at 15 – Check!
I was first diagnosed after my parents noticed my symptoms – I was extremely tired and thirsty and my mum tested my blood sugars.
They were a whopping 27.0 – some people may not know that a healthy person usually ranges between 4-7mmol.
A GP appointment and 2 day stay in hospital later and I was back home – complete with my own testing kit, tablets and enough advice to last me a lifetime (or so it seemed).
All of a sudden it seemed like I had all these people telling me what I could and couldn’t do – which felt incredibly restrictive [I think this is where my stubbornness and hatred of being told what to do comes from!]. My family and doctors meant well but they were grown-ups and I felt like they’d forgotten how it felt at that age to be what no one wanted to be – different from their friends.
It got to a point where frustrated and disappointed at my still-too-high blood sugar levels, I experienced what is known as ‘diabetic burnout’ and for several years proceeded to act like I didn’t have diabetes. I stopped attending hospital appointments, taking medication and started drinking Lucozade and eating chocolate. All this whilst pretending to my family and friends that I was fine.
It was only recently after nearly being hospitalised that I have started trying to get my act together and I finally feel that I’m starting to get there. I didn’t realise how bad I was feeling until I started feeling better if that makes sense.
This weekend I am walking Mount Snowden for Mencap and I don’t know how my diabetes will react – it’s definitely going to be a challenge!
At the end of May, I’m flying to Peru with my boyfriend to trek the Inca Trail & Machu Picchu for three weeks – so it’s a scary month to say the least!
This blog is my chance to chronicle the highs and lows of MODY diabetes and to hopefully raise awareness.