Living with MODY – By Steph Normoyle




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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.

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Very interesting article. Although we don’t quite fit the age bracket (!) my family has several members who have developed diabetes over the years. My paternal grandmother in her mid thirties (as was I), my Dad in his 70s, my elder brother (50s) and my Mum (at 81). None of us were particularly overweight; my Grandma was stick thin. I have never smoked and have tried to lead an active lifestyle. I just wish the newspapers and TV would stop suggesting that diabetics bring it on themselves by being obese and unhealthy. Certainly these are risk factors but it’s not the whole story.

By the way, I too walked up Snowdon two weeks ago, with my insulin and lots of snacks, and with my husband (who has epilepsy) so don’t let anybody tell you can’t do something – you go for it!

Hi Steph
I’ve suffered Type 1 Diabetes since i was 17 months old back in 1982. I don’t have MODY however I can relate to you.
When I was 16 I accidentaly forgot to do one of my injections but because it didn’t make me feel terrible like it did when I was a kid, I stupidly was under the impression that I only needed 1 injection a day as it didn’t seem to have an affect, until 6 months later that is. This was my way of sticking two fingers up to our condition.
I was in hospital twice with DKA and just before this occurred I’d applied for my driving licence.
Unfortunately because of this i wasn’t granted a licence for nearly 2 years because i hadn’t been to a diabetic checkup since I was 14 following a rather nasty remark from the consultant, I lied thinking I was smart I’d eat whatever drink whatever and really not care the effect it was having but it didn’t work.
I wanted to be just like everyone else without the difference of Diabetes, that people didn’t really understand that well then.
When I did start going to my checkups again i tried to do everything they said so i could get on the road.
After 2 years I passed my test got a car and was just like everyone else as no one knew i had Diabetes every time i travelled it was great.
When I had my son that was difficult on my Diabetes but it made me think that I’ve really got to change my attitude towards this as I’ve now got someone relying on me and if i can’t look after me how will I ever look after my son.
At one point when he was about 4 he seemed to be going to the toilet alot and i explained to him that I needed to check his sugar level just to rule it out, he was so brave and thankfully he didn’t have it and still doesn’t but I always keep an eye as my Diabetes is hereditory.
All I can really say is that when you’re trying to cover up your condition to your friends family medical professionals etc ultimately it ends up hurting you more than it does them, so if you’re honest with yourself about it then things like i’ve mentioned are so much easier to achieve with a lot less obstacles to overcome. Hope this helps.

Hi Steph

It was very interesting reading about MODY within your blog as I and my siblings who are all Type 1 probably fall into the same category. My Nana was Type 1 but she got it when she was 40. My sister then got it when she was 2 years old and this was 43 years ago when the doctor told my parents that it wasn’t possible for her to have diabetes and so she nearly died as a result of falling into a coma and having the appearance of a skeleton. I got it when I was 10 years old. Again, told to go on the planned family holiday and come back when we returned home, only to be so poorly and skinny, literally picking up the washing up bowl full of water to drink it and then being sick. My brother got it when he was 21 years old and then I had my daughter when I was 31. She was my reason for living but I lost her when she was 12 (would have been 13 years old the next day) in her sleep from hypoglycaemia. I won’t go into this at this moment though but just to say that I am so glad to have come across a blog where MODY is mentioned. I may ask for some blood tests to be carried out down the line. Babs.

Hi Steph
I have just tested positive after genetic testing for MODY 3. I was diagnosed with diabetes during pregnancy at 26 and my dad was diagnosed at 21. My son has just been diagnosed (almost 15), hence the reason for genetic testing. I also went through many years of denial that I was diabetic, mainly because I don’t get any symptoms. The last 6 months I have completely changed my diet and lifestyle and my last HbA1c came back at 44 (compared with 73 last November). The key for me is small snacks regularly rather than large meals.

Good luck with your climb in Peru.

You go girl, brilliant to see your diabetes isn’t stopping you from doing the Inca trail, after all why should it!
I’ve always carried on life regardless of my diabetes (well not regardless but you know what I mean). You just have to make sure you look after yourself and remember to take your insulin/snacks and away you go!! I’ve done a lot of travelling with no problems at all. Nothing you can’t do in life…………so go for it!!!
Good luck x

Misdiagnosed at 20 years old with type 2, went to every appointment for 2 years and gave up, diabetic burnout on steroids! I didn’t care if I woke up the next day… until when I lost a lot of weight, my dad said I was torturing him by wasting away! I had to go to the doctors. I was suffering from DKA and had always been type 1. 48 hours later, test kit and insulin in hand I’ve put on nearly 2 stone and feel amazing, all since 30/4/14. I’ve got control and now my life back! Keep us updated with your walks and treks. Time for me to get fit too!!!

Type 1 diabetes isn’t caused by unhealthy lifestyle or being overweight either. Its Autoimmune

Hi Steph, I was diaognosed with Type 1 diabetes in July of 2012, i went through the same of rejecting the idea, i have a young daughter and sometimes find life hard to accept, i am slowly getting better and happier within myself but everyday I believe I was cheated, my mom passed when I was 13 at the age of 38 from complications from diabetes, i will follow your blog, it gives me hope that I do not suffer alone but that can bring me friends of the same and strive for a hralthier life :) All the best :)%