JDRF Discovery Evening

Earlier this week, I was lucky enough to have the time and the reliable trains (for a change) to attend the JDRF Discover Evening, in London. After getting a little lost, I  found the New Moon pub, in Leadenhall Market, where the event was being held. I don’t know if it’s just me, but I find city workers congregating in one space quite intimidating. This was made worse by me seeming to be in everyone’s way, once in the pub! Doh!

The Discovery Evening was an opportunity for me to meet other fellow people who are living with diabetes. I found it funny though, there were so many bottles of wines and plates or pizza and pastries being given to us, you wouldn’t think we all had diabetes!

There were 7 topics of conversation this evening, covering research progress, fitness, type 1 poetry, a talk from the co-founder of the MySugr app, and how to get involved with JDRF.

The evening opened with a update from JDRF, regarding their proposals and progress. The charity divides its research projects into 3 main segments – Cure, Treat and Prevent. There are so many professionals, trying to find a way to end life as we know it, with diabetes. It’s really quite humbling to know that so many people are spending their time and money, trying to help us. To anyone involved in this, thank you, on behalf of everyone with diabetes!

The second talk was given by Monika Reddy, Imperial College London, who is involved in the BiAP project. There are many research studies currently being carried out across the world, to find a cure for diabetes. Monika’s study, is a clever approach, and one that I hadn’t heard about previously.What makes this study different from the others, is that the algorithm used, is based on the glucose responses of biological alpha and beta cells of the pancreas, implemented on a microchip.

There are currently 20 people who are part of the clinical trials, which started in 2012. The study uses the Medtronic CGM and the Accu-Chek Combo Spirit pump, in collaboration with the algorithm, which is on a microchip. Looking at the graphs Monika provided, there seems to be an improvement in participants’ blood glucose levels, compared to when they were not ‘linked up’ to the BiAP unit. Considering this project commenced in 2012, the team have made great progress, and I can only wish them the best!

We had a bit of a break from all the information that we were trying to take in, with two very interesting poets. Initially reading ‘type 1 poetry’ on the agenda, I didn’t have a clue what this meant. However, Naomi, who has Type 1 Diabetes, and her partner Dan, who had a pancreas to be envious of, showed that diabetes isn’t all doom and gloom. Naomi’s poetry about hypos and hypers, and eating all the food in the cupboard, made me laugh, which was really comforting. As it turns out, I was actually at the same university as Dan, it’s a small world!

After a break (filled with more wine and pizza), the evening resumed, with a JDRF supporter talking about how diabetes affected her relationship with exercise. After a spell of associating exercise with ‘bad’ sugar levels, Rebecca Butterworth was reunited with her love of sport. Rebecca has done so much with her life, including travelling the world, and I really do admire her. Even running the marathon, Rebecca shows how diabetes shouldn’t stop you doing anything. Well done, and best of luck for the future, Rebecca!

The next talk was really inspirational. Fredrik DeBong, Co-Founder of the MySugr diabetes app, travelled all the way from Sweden, to share his experiences with diabetes. I was expecting Fredrik to simply go through the various elements of his app. However, Fredrik shared so much more, and I am incredibly grateful for his bravery in doing so.

Fredrik brought up the rather sensitive issue of Diabetes Burnout. This is a topic that, like many mental health issues, is seen as a stigma in society. People who suffer with ‘burnout’ often go through this period, alone and overwhelmed. Sure, I hate having diabetes and I often think ‘why me’, but ‘burnout’ burns a little deeper than this. Not wanting to test your blood glucose levels, injecting a random number of units of insulin, or simply not bothering to inject. People who go through this stage, probably know the potential consequences of doing this; it certainly sounds like Fredrik knew. But that doesn’t mean anything, when you are in a severe depression, and just want the ground to swallow you up, until the diabetes has disappeared. Sadly, that isn’t going to happen any time soon.

Looking on hindsight, Fredrik came up with a number of very good points, that I can relate to:
“Diabetes is like wrestling with monsters”. Every day is a struggle for me. Sometimes I win, sometimes, the diabetes monster wins.
“You nag, you lose”. I wish more people understood this. I know I’ve got to check my sugar levels, and I know I have to inject. There’s no need to remind me. My diabetes is going to be a part of my life for a very long time, and it’s not something I can forget about.
“Progress, not perfection”. I admit, I can be hard on myself, when it comes to numbers. Since completing my DAFNE course, I have wanted my sugar levels to be 4.5-7.5. This rarely happens, and I do annoy myself. I am slowly starting to give myself a break if I don’t get in this range. I will get there, and it doesn’t matter, as long as I am well.

I really admire Fredrik for what he has done in recent years. He has made a good situation, out of a very bad one. Creating and using the MySugr app, is a way of giving the diabetes monster, a face, an identity. This way, diabetes can’t just hide in the corner, slowly taking over our lives. I love this idea. Setting challenges is also a great way of spurring me on, even when I’m having a ‘bad diabetes’ day.

Although I’m not a great lover of sport, the next speaker, Kyle Rose, provided the audience with some very useful information, regarding exercise. A useful pointer I picked up was, the suggestion of aiming for a bg level of around 7, before exercise. I think I’ll try this when I get back to my zumba classes! Kyle also brought up the idea that we need to control our diabetes, before it controls us. So making sure we get out health check ups, not too many hypos/hypers etc. A very good point.

The last speaker of the evening was Dilan Shah, who has given me a wealth of ideas that I want to get involved with! Dilan has taken part in some fantastic events, fundraising for JDRF, including walking Kilamanjaro. I’d love to do this, but being anaemic, I’m not sure I’d be up to the challenge for another couple of years.

The main reason I attended the JDRF Discovery Evening, was to meet more people who are in the same scenario as I am. I met a father, who’s 8year old son has had diabetes for the past 2 years. I met a girl, same age as me, who was diagnosed last year, but has already ran a marathon! I also met a man who like me, was initially diagnosed with type 2 diabetes, then later told he was type 1.

The event has given me a lot of confidence to do more positive things in my community. Myself and Andy are really getting going with the Peer Support Scheme (initiated by Diabetes UK). I’ve had a really good response from my local diabetes centre, and Diabetes UK regional office, who are keen to help me spread the word. I’m also excited to be involved in setting up the Basildon Diabetes UK Group. I put my name down to be joint-secretary with my lovely Nicola, so I’m looking forward to making plans for the group.

There’s so much I want to do, to help find a cure for diabetes, and to help people living with the condition, overcome their daily struggles. Helping other people, helps me.

 

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