
The disconnect between diabetes science and reality
Who knew living with diabetes was such a pain in the arse? That may be putting it a bit bluntly, but before interning with Ayuda, I certainly didn’t. Perhaps naïvely, I presumed that diabetes, like polio, was a horrible disease but we knew how to deal with it. To deal with polio, you just need to be injected with a vaccine before you are exposed to it. To deal with diabetes, you just need to be injected with insulin fairly regularly and watch what you eat. Job done, right?
Wrong. The day-to-day struggles of people with diabetes are invisible to people who don’t have the condition. We don’t see the efforts put into having to remember the minutiae of each meal so that it can be recalled later in the day. We don’t see the self-diagnoses people make everyday by weighing up how much they have eaten, how much exercise they have done or are about to do, how far from home they are, and many other details that people without diabetes would never be expected to recall. And we don’t see the guilt that inevitably arises from having a condition that is so wrongly associated with eating unhealthily. Or the fear of going into hospital and having to give someone else control of your sugar levels.
The day-to-day struggles of people with diabetes are invisible to people who don’t have the condition.
Part of the reason this struck me so hard was the fact that, before coming to Ayuda, I thought I knew quite a bit about diabetes. I’ve just finished my second year of a biochemistry degree at Imperial College London. We were taught the structure of the insulin receptor, the mechanism by which its constituent monomers trans-phosphorylate each other upon dimerisation, and the way in which various proteins are assembled on the receptor to trigger a signalling cascade that ultimately results in an increased prevalence of high-affinity glucose transporters embedded in the plasma membrane of the cell.
As it turns out, this information was not particularly helpful.
While that may not be too surprising, I believe it does strike at the disconnect between the scientific community and people with diabetes. For scientists, diabetes is a challenge that we know the answer to. Since glucose is so important to the chemistry of life, we know how it works and how insulin affects it — diabetes is the end result when something breaks down, and injecting insulin and monitoring your diet is the way to get around it. In our biotechnology module, we were taught about the triumph in the 1970s of genetically engineering E. coli to produce human insulin. As far as scientists were concerned, they had “solved” diabetes by developing a cheap method of insulin mass-production. This is a step forward for certain, but for people with diabetes, their lifestyle continues to be dominated by constant trial and error in an attempt to maintain a balance between the twin fears of hyper- and hypoglycaemia.
For scientists, diabetes is a challenge that we know the answer to.
It seems pretty clear to me that the disconnect between the scientific community and people with diabetes won’t go away on its own — the former casts all subjectivity aside, while the latter have no choice but to try to find their own personal balance. I’m now convinced that, to really improve the lives of people with diabetes, we need to develop personalised technology that adapts to each user, and ultimately, relieves them of all the self-diagnosis. Short of a cure, this is the only way we could really consider diabetes “solved”.
To stay updated please join our list.

