Does T1D need a makeover?

So, our new PM (Theresa May for those outside of the UK) has Type 1. As I’ve tweeted before, that’s no body’s business but her own. But, selfishly, I’m kind of glad we’re getting some media attention. Channel 4 did a decent tribute to T1D a few weeks ago. The older I get and the longer I live with Type 1, I’m astounded as to how many people think ALL diabetes is the same.

It’s not the same.

My auto-immune disorder resembles your Type 2 or MODY, but it’s not anything like it in its needs and requirements. It’s Type 1. It requires more testing. It requires a life-long plan on how to cope with the constant inflammation.

Plus, and for me, a defining differentiator: I didn’t do this to myself. I was born this way, and then something in the environment, at some point in my life, triggered the Type 1. I’ll never know what exactly it was, but I have several hunches. I took Accutane three times between ages 15-20. I also had a terrible virus in my early twenties, was it that? My diabetes began presenting around aged 27. But, I was young and presumably healthy, I had no idea that the blurry vision and constant thirst wasn’t just from my marathon training or poor diet and lifestyle. It wasn’t until I was 30 that a doctor called me back in for ‘a touch of sugar’ in my blood.

Recently, at my annual NHS diabetic examination, the nurse asked me to come round to his side of the desk so I could see ‘just how much’ I was costing the NHS annually. After pointing out to this nimrod that I am a taxpayer and also Type 1, I then had to point out that many of the items on my pharmacy refills list were actually REQUIRED to keep me alive, something, frankly, for which I would gladly pay. I was horribly offended, of course, by his sheer ignorance especially being ‘in the business’. My first GP in London kept asking me why I needed so many test strips as he was a Type 2 and didn’t test so frequently. I told him that I tried to conserve, but I generally only tested 5 times a day. “5 times a day?” was his shocked reply. Yes, that’s right. Every time I eat, I actually need to test to see HOW MUCH insulin is physically required to cover what I am about to eat.

My thoughts on diabetes run long and deep. For the first 5 years of my diagnosis, I was miscast as Type 2. Anyone with half a brain can look back now and see that couldn’t be right. I weighed about 64 kilos and was all muscle. There was no way I had Type 2. But I only know that now based on life experience and all my ‘hands on’ with this disease. I also know that Type 2 is not always caused by being overweight, so please don’t think I’m judging. But, when I walked into the most amazing endocrinologist’s office ever – when I first moved to London – he actually laughed out loud and said: “Julie, it’s so nice to meet you, but you are a Type 1”. How do you know, I asked? Because I just do, he said looking at my then 60 kilo frame. I never blame anyone for any misdiagnosis or uncertainty here. Back 16 years ago when I got this, adult Type 1 was still pretty rare. But it’s sadly increasing as each year passes. A recent school of thought believes there are microbes we are exposed to that may trigger it. For example, in Finland, their cases of Type 1 are globally off the charts. What’s microbally going on up there that’s not happening in the rest of the world? Others think it’s gut borne and from all the antibiotics we’re getting medically and in our food. Genes also play a large role. For example, if someone in your family has Type 1, you go from a 1/300 chance of getting Type 1 to a 6/100 chance. Big difference.

As far as the numbers go, I hope every day my child doesn’t get this cursed disease. It’s not that it’s a total bother all the time, because you do just learn to get on with it and manage it as best you can. But, that’s so easy for me to say since I got it at age 30 and had lived a pretty crazy and raucous lifestyle before then. I consider myself really lucky. I can’t imagine getting it at the age of 8, like my newly diagnosed niece. That’s your whole childhood high jacked by moderation. And whilst I do believe in moderation and balance, I’m also always the first person to say “everything in moderation, including moderation”.

We recently brought home a hypoglycaemic dog and the stress of worrying whether or not he had diabetes over the next few weeks almost toppled me. What would I do if he hypoed? How would I know? There was even the teensiest part of me that wanted to send him back to the breeder (maybe more than teensy). Just based on the personal stress I know his possible diabetes would cause me and my family. Obviously, I didn’t do that simply because I am diabetic and if anyone can handle it, I can, right? But, man…there was a moment of sheer terror.

With my niece’s diagnosis I realise how much more seriously I have to take my healthcare. Funny, right? Because I have a kid of my own, but it wasn’t until her diagnosis that I totally had a wake up call. I think the remaining part of 2016 for me might look like a crusade to educate the world on Type 1 and to see if we can’t make just a tiny bit more progress toward finding a cure. Diabetes.co.uk recently posted that the average Type 1 requires 1462 shots a year, just to stay alive. I was originally semi-offended about the post, because, as a Type 1, you just have to get on with it. But I later realised they were actually doing their bit to help the rest of you understand just how constant it is to live with diabetes.

As with all things me, let’s throw some money at this problem. I love the JDRF society. No child should have their childhood taken over by constant finger pricking and insulin injections. Btw, if I sound ungrateful about the constant finger pricking and insulin injections that are keeping me alive – I’m not.

It’s just exhausting.

When my niece was diagnosed, I bought an Abbot Lab’s FreeStyle Libre glucose monitor that in nearly 15 days has practically changed my life. In this short amount of time, the meter has clocked so much data, I have a good handle on what my current A1C reading is as well as realising I have been taking too much glargine every night which in hindsight has clearly been causing my super low mornings.

Fellow diabetics, can we please campaign to get the Libre covered under the NHS for Type 1s who have completely higher checking requirements? And, can we also campaign to get the FDA in the USA to even clock this device on its radar so my newly diagnosed 8 year old niece can have some libre – freedom – in her new diabetes lifestyle?

Change is hard. And I personally resist change. But these times, they are a’changing. There is a cure for T1D in my niece’s future. Most people can only change if they want to. But Type 1s have no choice. The only thing we can do is change how the rest of the world perceives this disease.

Fight on!

Loving my Libre

Loving my Libre

#PM #TheresaMay #T1D #AbbotFreestyleLibre #T2D #Mody #endocrinologist #diabetescouk #JDRF #NHS