I was diagnosed with type 2 diabetes in 2005, when I was 34. It was a bit of a bolt out of the blue. I was in the Royal Navy at the time and had to have a routine medical because I was changing my house insurance. I had no symptoms, so it was quite lucky really that I found out then.

There was a lot of ignorance on my part. I’d heard of type 2 diabetes, but I didn’t really know what it was. I know so much more about it now. At the time, I thought it was associated with obesity and bad diet and so on. That was a preconceived idea I had then, which I think follows through to what a lot of people think about the condition today.

I didn’t really think, ‘why me?’ I was told it was just one of those things.

I was diagnosed with type 1 diabetes in 2001, aged 18. I got all the usual symptoms, the thirst, going to the loo a lot, and I lost a lot of weight. I had a blood test and was at work later that day when I got a phone call the same day saying I had to get to the hospital immediately.

I was a bit numb. I don’t think I took in half of what I was being told. They showed me how to do injections and I had to show them I could do it, but it’s obviously a complete lifestyle change. I was 18, just finished college, just started my first job in a travel agent, and I didn’t want to watch what I was eating and drinking, inject insulin or test my blood sugar. I just wanted to be like my friends.

I didn’t deal with it, which is why I’m in the pickle that I’m in now.

In 2018, I noticed I was weeing a lot. Leading up to that, I had a bit of numbness in my leg – I don’t know if that was related or not.

I did a bit of Googling and my biggest fear was that I maybe had bladder cancer. Diabetes didn’t come into it!

When I went to my doctor they did a test and told me I was prediabetic – where your blood sugar levels are higher than usual, but not high enough to be diagnosed with type 2 diabetes. I thought, ‘I’ll take that in a heartbeat over bladder cancer. I can do something about that.’

But I was also like, ‘me? Really?!’

There’s a lot of stereotyping around type 2. People think, ‘oh she can’t be type 2, she’s athletic!’

I suppose I was guilty of that myself. People think, ‘oh, she’s athletic, she can’t have type 2!’ But there are many genetic and lifestyle factors that come into play.

My brush with diabetes made me realise that, in the black community, we don’t really speak about type 2 diabetes that much, despite the fact that we are more genetically susceptible.

Now, I want to really educate black people. It’s not a crime that you’ve got type 2 diabetes, but what can you do about it? And how can we prevent our sisters, nephews, nieces, cousins, from getting it? We don’t talk about these things enough, and that’s part of the problem. We need to talk about it.

I want to show women, particularly black women, that it’s time to get out there, try new things and make ourselves more visible.

At the same time, we don’t need to be doing everything to Olympic level. Small steps is key.

It wasn't until the end of the first year of my postgraduate research degree in accessible public transport, that I was first diagnosed with type 2 diabetes. There’s no history of it in my family and it’s not related to my medical condition.

At first the diagnosis seemed like yet another condition to have to come to terms with and when I was unable to control it with diet alone, I had to begin a regime of Metformin and Gliclazide tablets and subsequently a daily Liraglutide (Victoza) injection. I quickly realised that another course of major adjustment in my life had arrived, when I was least expecting it. 

Sight loss

I was born with a condition called "Riley-Day Syndrome" or to give it its full title "Familial Dysautonomia". I fortunately only have some parts of this condition, which mainly affects my body's sensitivity to pain and temperature. This means that I need to be particularly careful when bathing, showering or cooking that I don't accidently scald myself and not realise it at the time.

After having suffered a routine bout of conjunctivitis as a baby, which deteriorated into a serious eye infection, which resulted in both my corneas being damaged, the decision was taken to perform corneal grafts on both eyes, in order to attempt to restore my sight. 

Unfortunately, another trait of Riley Day Syndrome presented itself following the surgery, which is that my body creates excess scar tissue round wounds and so the grafts were never able to take fully. The first eight years of my life were mainly spent either in hospital having more corneal grafts performed or being schooled at home by a mixture of my parents and various home tutors.

I'd be lying if I said that these early years of my life weren't traumatic, but I had the resilience which many children are blessed with, to be able to adapt to major changes in their lives together with the unwavering love and support of friends and family.

I also had my love of railways and trains, which has been with me since birth and which will be with me for the rest of my life.

I had to learn new, safe ways of finding my way around, learning braille so that I could read once again and learning to touch type, so that I'd still be able to communicate with the outside sighted world, which I'd left behind for good. 

All these skills still stand me in great stead today, especially the ability to touch type. In those days, I was using either a manual or an electric typewriter, whereas today I'm typing this article on a PC. The ability to communicate by whatever means is nevertheless an absolutely essential one.

At the age of 11, I began attending a boarding school for the blind in Worcester, which still exists today. In the eight years I spent there, we were taught to live independent lives, to navigate safely round the town centre, do our own shopping, cooking and washing and to travel safely on public transport to and from home.

I did my GCSEs and A-levels and Worcester and then went on to read modern languages at the University of Wales, Swansea, before deciding to specialise in public transport and complete my postgraduate research degree in London. 

Sharon

Mahn’s diagnosis was the worst day of my life. Because his dad has type 1 he had that understanding of what it meant. I remember the first thing he said to me in the hospital was “Am I going to have hypos like daddy?”. That was his biggest fear. I was very emotional and really we were just in shock.

Harj

I did ask then at the hospital whether there was any research he’d be able to take part in, but they told us not to worry about that just now and to concentrate on sorting out his blood sugars. But having type 1 diabetes myself, I thought research and having the chance to access a new type of treatment might help and would certainly be better than nothing.

I searched on the internet and looked through hundreds of clinical trials that came up. I was concentrating on phase 3 ones, and that’s how we found out about the PROTECT trial.

What we didn’t know at the time was how tight the window is to get in there for these immunotherapy trials - it’s only a few weeks from the point you’re diagnosed. That’s because the treatment is trying to preserve beta cells and they need to give it to you quickly, before too many cells get destroyed by the immune system. We were already three weeks into Mahn’s diagnosis at this point and I realised we had to act fast.

Hear from our scientist Professor Colin Dayan on the things to know about immunotherapy research if you or your child have just been diagnosed with type 1 diabetes.