Mahn's story: taking part in immunotherapy research

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.

Harj

We live in London and I contacted the hospital nearby where the trial was meant to be happening, but because of coronavirus they hadn’t opened up for recruitment yet.

They told me Sheffield would be the first trial site to open, so we then just had to wait and see if that would happen in time. And I remember counting down the days, because at this point we had three weeks left to get into the trial before that window closed and it would have been too long since Mahn was diagnosed.  

The biggest consideration for me was is it safe, are we taking a risk? But the team I spoke to spent a long time talking us through the history of this drug - Teplizumab - and the findings from past trials. And lots of immunotherapy drugs have already been used for other conditions and have been around for years, so safety wise we felt comfortable.

It was two weeks later when we heard from Sheffield. They knew how desperate we were and had pushed really hard to make everything happen in time. We’re so grateful for everything the team there did. Mahn was patient number one.

Taking part in the trial

Sharon

We went up to Sheffield as a whole family with Mahn’s two older brothers. For the first visit we had to stay up for 14 days because they gave Mahn an infusion of the drug every day over that period. 

Mahn

I know the treatment is trying to preserve beta cells and change the immune system. And that I’m having tests over time to see how it has changed things.

I went into the hospital everyday for two weeks. They put a drip in one of my hands to give me the treatment and took bloods from the other hand. So it was hard because I had bandaged hands, but in the end I know it’s for the greater good.

Sharon

The research nurses and whole team were just fantastic, and it’s great to be surrounded by experts in the field. They brought board games in and they make it fun and enjoyable, as much as they can. There have been difficult times, but Mahn’s doing really well and we’re always checking in with him and making sure he’s happy to continue.

Harj

He was on little doses of insulin when he was first diagnosed and now he’s not taking any. He’s come off insulin and we hope it stays like that. Maybe it’s the drug working, maybe there are other reasons. He could be on the placebo - we don’t know - but it has definitely been a really positive start for him. 

Harj

My hope is that the immunotherapy could help him to keep the beta cells he has still got and that those cells will keep on providing him with some insulin. That’ll make things so much easier for him day-to-day. He’s not having the lows, he’s not having the highs and he’s living as close to a normal life as possible.

It’s the scientists and the doctors that are doing the clever stuff, but we’re doing our bit and it just makes us all feel like we’re helping. We know his brothers will also have a higher risk of type 1 diabetes because they share genetics. So, if we can help find a cure or something that prevents it that’s what we want for the future. And it’s research that will do that. 

Sharon

We want more parents and more doctors to know about these opportunities to take part in immunotherapy trials. As soon as a child’s diagnosed, the parents should be given this option. And then you know what’s available if you want to explore it more, and if you don’t, then that’s fine. But the information should be given to you. It shouldn’t have been as hard as it was for us to find out about these trials. It’s hope at the end of the day and the more research they do, the better the outlook. 

Mahn

If one of my friends got type 1 diabetes, I would tell them to go on the trial. I would say live in hope. 

The study Mahn took part in is looking for participants right now. If you or your child have been diagnosed with type 1 diabetes in the last six weeks you may be able to take part. Find out more about the PROTECT study and other immunotherapy trials that are recruiting.