Neonatal Diabetes

Neonatal diabetes,

I communicated with someone who lives in the UK, and she was born with diabetes. I was so impressed with her report in a UK group. She gave me permission to post her story here. This report was given in 2015.

"I was born with diabetes. My actual type is the rare neonatal

diabetes mellitus, which again can be a factor according to the

consultants. My show off moment is that I made medical history by (1) being born with DM and then (2) surviving past the first few months.

Then again 46 years ago was the medical equivalent of the dark ages and the medics didn’t think it was possible for someone so young to be diabetic, so they didn’t test me for diabetes. Because I was fitting, they decided it was epilepsy and pumped me with more sugar (really helpful that one). In fact I was on my way out when a doctor who was diabetic herself decided she’d come to see the baby who was causing all this bother and it was her who said test me for diabetes. Without her I’m pretty certain I wouldn’t be here now. There was a paper written in The Lancet when I was a baby.

I always needed to have a lot less insulin than was “normal”. I’m not sure if the medics got to the bottom of this scientifically but it was regularly noted and mentioned. That actually makes sense too, that there’s some (if a little) of my own home made insulin going around. Also I have seen a medical report that says too low hba1c is harmful, and there’s a range that’s just right. Sounds a bit like bears and porridge, too hot, too cold, just right.

My keeping me at that limit good hba1c range is always my goal (and happily I can do that). My reactions aren’t normal either, for instance most T1s get really high blood sugars when stressed. If I get too stressed then my blood sugars go too low - that’s why I use meditation and mindfulness to help with the stress management, which helps the diabetes. My pediatric diabetic consultant used to do talks about what “most” T1 children did and she used to think “and then there’s Louise”. I just think that I’m blessed having been born with NNDM because it seems to have helped me, for whatever reason that is. I do also give myself a huge pat on the back for owning my diabetes, working with my diabetes and having it part of me.

It is really nice for folk to actually take notice of my weird and wonderful background. I’ve had (idiot) doctors say that they don’t believe me - I put them straight - why would you make this up! . Thankfully all of my consultants have been good ones."