About 12 years ago, when I was a slim 26-year-old, I was diagnosed with “Type 2” diabetes after glucose showed up in a routine urine test. This surprised me less than it surprised my GP; after all I came from a whole family of unusual cases of “Type 2”, and my Mum was diagnosed at a similar age.
Five years later, Diabetes UK’s Balance magazine ran an article about MODY, which runs very strongly in families, often appears by age 25, and is not associated with being overweight. In different parts of the country, my Mum and I both read this and thought, “that sounds just like us!” As the youngest family member, and therefore the most unlikely case of Type 2, I was despatched to my GP with a copy of the article to ask for genetic testing. The tests revealed that we all have a form of MODY called HNF4A.
There are several different types of MODY, associated with mutations in different genes. It’s thought that around 1-2% of people with diabetes actually have MODY, although it’s frequently misdiagnosed as Type 1 or Type 2 so most of those people don’t know it yet. It’s generally treated with tablets, although some people do progress on to insulin later. I’m lucky in that I currently get very good control from a tiny dose of gliclazide.
I’ll be blogging about my experiences of living with MODY and being a rarity, as well as my thoughts on doctors, patients, and diabetes in general. I’m passionate about science and recently took part in a very exciting research project, so you’ll be hearing a fair bit about that too. I also hope that I can help fly the flag for some of the other rare forms of diabetes.
The rarer types of diabetes are often overlooked, and sometimes as a patient it can feel like you are on your own, so I’m looking forward to meeting some of you in the comments and hearing what people have to say – please do join in and let me know your thoughts!
Diabetes aside, I’m a keen amateur photographer and general all-round nerd; you name it, I’m interested in it. You can find me on twitter as @sparklyredshoes – come and say hi! I apologise in advance for my pointless ramblings, retweets, ill-informed rants, and occasional swears.