The new feature at home: I turned a bit of the kitchen into a blackboard, and am now adding carb contents per hundred grams of commonly cooked stuff. I also have weights of our pans so that I can subtract that off whatever I need to weight inside the pan. Never ending maths!
I have returned from holiday. Relaxing in Croatia was luckily just the thing I needed and gave me some space to come to terms with my new condition. We were lucky enough to have a cook, and she must have thought I was a real English eccentric: insisting on having my digital kitchen scales at every meal to calculate how many carbs I was eating. My family started off by waiting politely for me to test my blood, furrow my brow, calculate carb content and then administer medication before eating, but they quickly tired of that when they realised how much time I had to spend on all the faff!
Having returned home, I received the good news that I am eligible for the monopepT1De study. The name is a clever play on words: “T1D” is short for “Type One Diabetes” and the study is about using mono peptides to stop the body’s immune system from destroying the insulin producing beta cells in the pancreas. There is some information on the trial here. If you’re feeling really clever, you can read more here.
During the 1980s, it was found that by using auto-immune suppression, the destruction of beta cells could be slowed. However given that insulin therapy is relatively straight forward, the side effects of non-specific auto-immune suppression are considered undesirable. A treatment whereby the auto-immune response is changed in a more targeted way has been pioneered for certain clinical allergies. Dr Liu (who I will be seeing) and colleagues have developed a version to treat patients with type-one diabetes.
The trial will involve me going to the hospital every fortnight to receive an injection of the peptide “vaccination”. Patients are all recently diagnosed type one diabetics, and are split into three groups. One group will receive the peptide injection every fortnight, one group will receive a placebo, and the last group will receive alternating injections of peptide and placebo. The trial is “double blind”, meaning that neither the patient nor the doctor administering the treatment know which group the patient is in.
The primary outcome of the trial is to prove that the treatment is safe. The secondary objectives are, I quote, “to assess stimulated C-peptide production, HbA1c, mean glucose excursions, quality of life scores, and islet cell auto antibody biomarkers of beta cell specific immune responses.” I have no idea what that all means! But if it works, it should allow the patient to be less dependent on insulin injections than they may otherwise be.
I’m keen to do the trial for two reasons. Firstly, it is all for the good of science and developing effective treatment! Secondly, there is a small chance that I will receive the treatment rather than the placebo, and a chance that it may work. I’m not too optimistic though, because apart from anything else, I have already experienced “clinical onset” type one diabetes, which means that I have lost enough beta cells to be insulin dependent. This treatment will not replace cells already lost, and they do not grow back themselves.
Also, in my position, I’m just keen to get to grips with managing the condition. I don’t want to start dreaming of a cure to diabetes as there isn’t one yet, and that will only be setting myself up to be disappointed. A month in, life isn’t too bad so I can live with the injections. I’m also getting very good at mental arithmetic!
The study is funded by the JDRF (I am raising money for them by running the London Marathon) and the Diabetes Vaccine Development Centre.