Diabetes Week : Research, Research, Research – and all my questions! by Jade Kent
What do I want from it? What do WE the diabetics of the world want from it? How has it helped me so far? What is realistic to expect from it? Why does it take so long? Why don’t governments want to fund it? Who makes the priorities?
Me and research have had a bit of a rough ride since my diagnosis in 1994. I remember very clearly as the senior pediatrician sat on the end of my bed after my injection tutorial and asked me how I was feeling. I’m pretty sure that I felt fine, I mean I was ten years old I had no idea what whirlwind had just been unleashed on me. It all sounded simple you want to eat, you do an injection and everything is hunky-dory at least that’s the way they sold it to me. But what really stuck in my mind, is when the doctor said that I needn’t worry because before my 20th birthday there would be a cure for diabetes and my days of injections would be over. I’M STILL WAITING… as are millions of other diabetics. I guess his comment was innocent but I have to admit that when I see an article about new research in diabetes about prevention or vaccines or new anti-diabetic tablets for type 2 I can’t help but think, that’s good, but where’s my cure?
On the other hand I have seen many advances over almost twenty years of diabetes. For example, my first glucose monitor needed about a litre of blood and took a minute to give me the test. My latest one barely looks at my blood and I have my answer in 5 seconds. So, that’s progress, right? It’s the same as far as my treatment goes, I started with syringes and vials, and then I negotiated pens and cartridges which seemed funky for about 3 days before it just got boring again. Then, I was pushed into taking the plunge for a pump. I wasn’t convinced that I wanted something attached to me 24/7. More to the point why on earth would anyone want to make their invisible disability visible?!! But I ended up hooked up to my little blue pump for about 18months, and whilst it brought me no salvation it gave me peace of mind, especially regarding night time hypos. With the pump came the constant glucose monitors (cgm) which are pretty impressive even if they become the bane of our lives quite rapidly. This time last year I was wearing one for about a week every month and between the infection and the sensor site and my skin reacting to the plasters, enough is enough. It’s frustrating when research gives us a glimpse of something good and yet there are still things that will hold us back. It’s hard to accept that we can send a photo from a phone in Europe and it will arrive rapidly on a phone in America and yet, diabetes still seems to baffle so many. You only have to type in diabetic treatments or causes of diabetes in a research engine and that stuff that can come up is quite alarming. Which brings me to my next question, why do we still not know why certain people get type 1 and others don’t? Does it or doesn’t run in families? Is it caused by a shock in pre-adolescence? Apparently not, but the few diabetics I know have an important “event” not long before their diagnosis, could just be coincidence but is it?
Along these lines of myths come the next one which is my biggest bug and I’m pretty sure that’s true for most diabetics. When you tell someone you’re diabetic and they start locking up all the sugar in their house as though just seeing it will cause something horrific. Or the people who say things like, if you just looked after what you ate/Or did more sport your diabetes would go away. Or the “I know someone who had diabetes and now they don’t, why don’t you make an effort to get rid of it?” I know these people don’t mean harm but just stop. Please. Second to that is the horrific confusion between type one and type two, the number of times I scream at my radio or tv when they start spouting utter rubbish without specifying who they are addressing. Journalists should do their research!
I have had diabetes for nearly 19years and it has never run smoothly or followed the textbook. Many doctors have tried to blame it on outside things like ‘it’s cos you’re a student’ or ‘it’s cos of your hormones’ during my teenage years. But eventually they ran out of excuses and despite all the tweaking in the world with my pump and cgms and different ratios
– An aside but how the hell do you cope with diabetes if you’re bad at maths?! What with ratios between Carbs and insulin, percentages of basals rates and the like?
Until we got to the point where nothing seemed to be working and my hba1c was still between 8 and 9 and most often closer to 9 regardless of what I did. HERE, research has helped ME. I moved to France 8 years ago and my diabetes has been followed here for six. Last year my diabetic specialist sent me to a diabetic research clinic in Montpellier to get another opinion. After looking at my results and a discussion the consultant offered me an implanted pump. This pump has existed for at least 20years but the treatment is not currently an “official’ treatment. The pump is under my skin and the intra peritoneal area, just left of my belly button. The operation went well but the aftercare hasn’t been simple, but last time I went for my consultation in Montpellier they took blood and I got them back, my hba1c is 7% three months after the operation. Then, all I can say is thank you very much research. It’s not perfect, there are things to change with this implanted pump, I am officially part of the research into this pump so, they could technically take it away from me at any moment. But, I’m currently sitting pretty at an Hba1c of 7% after 19 years of struggle – do I need to explain any other reason as to why for the near future (and beyond) I’ll be keeping this pump!