Monday, 1 December 2014

Animas Vibe, Stateside

After four happy years on the Medtonic Veo insulin pump, I made the decision to switch to the Animas Vibe in January this year, after careful consideration.  I've always known that the customer service behind a pump is far more important than its sexiness, but having got to know the pump, and experienced some of the customer service, it was, as they say, a 'no-brainer'.  

I've been rocking Dexcom CGM as part of my diabetes arsenal for almost two years, without a single day when I've taken for granted this incredible technology.  Integrated CGM means the option of  the glucose data being sent straight to the colour screen on the pump, rather than lugging around a
separate unit with the already weighty collection of diabetes paraphernalia I keep at my side constantly.  And the waterproof feature meant I could start surfing again without the blood sugars creeping up to the uncomfortable teens afterwards.  A day-kayak no longer comes without the unnerving feeling that too much fun could end in tears.

Our friends in the US have long been waiting for the Animas Vibe to reach their shores, thanks to the FDA's notorious much lengthier and more stringent approval process.  But there's great news........The Vibe is Stateside!

In a press release from earlier today, Animas proudly announced the release of the Vibe in the US, now approved for people aged 18 and over. So those over the pond an finally get their hands on this sexy little pump, from a company with an excellent rep.

Check out their website for more information, here.

Sunday, 23 November 2014

Down Under with D: Travelling with diabetes

When we tied the knot three years ago and took a brief 4-day trip to Cornwall as a 'mini-moon', Jamie and I could never have known how much would change almost instantly in our financial situation.  The plan had always been to travel New Zealand for our honeymoon, a dream I'd had for the best part of 10 years.  But with the recession, a property which plummeted in value and a redundancy for Jamie things took a turn for the worse, and the honeymoon we had planned had to be shelved until further notice.

Three years on, and with a lot of hard work and saving under out belts, Jamie and I are finally realising that dream and in just under two months time will travel down under to spend nine weeks in New Zealand and Australia, finally enjoying the honeymoon we never had.  We've spent months booking flights, researching the best ways to get around, studying travel guides, investing in snazzy cameras and checking out the delights that these magnificent countries have to offer.  But as the time to head off to try our hands at being intrepid explorers approaches, the daunting task of travelling with diabetes has started to dawn on us.

At times travelling with diabetes can seem like having an extra person to manage, from catering for the extra bag the insulin pump and CGM paraphernalia demands, to the pre-ordering of 3 months worth of supplies, ensuring we have a plan for hypo treatments to keep on us at all times, and locating hospitals and places of safety abroad, just in case anything goes wrong.  And I've learnt that if you plan for Armageddon, you will be somewhere close enough to being prepared for the adventure ahead.

Here are a few of the tips I've learnt:


We've chosen to fly with Emirates, and discovered the benefit of being able to reserve exit row seats, - albeit ones we may have to give up if anyone is travelling with a baby.  Now, exit row seats aren't a diabetes issue as such, but as someone who has found that my blood sugars start to rise as soon as I start to get uncomfortable or frustrated on long distance journeys, having the option of being a little more comfortable and being able to get more sleep - therefore reducing the levels of adrenaline and cortisol flying around my system disrupting my blood sugars - is a god send.  Our journey is an eye-watering 27 hours, so the more of that I can avoid my blood sugars going haywire, the better.

Disconnecting during take-off and landing

When I read this article by Melissa Lee at A Sweet Life about why to disconnect your pump during take-off and landing, I was flabbergasted that more is not made of this in initial pump-user training.  You see, when the pressure changes inside the plane, your insulin has no way to cater for those pressure changes without pushing air out of the insulin, called 'outgassing'.  Think of a can of fizzy drink, when the pressure in the can changes by you opening it, air bubbles are forced out of the liquid.  The same thing is happening with your insulin as it forces a bubble out of the tubing in order to cater for the pressure change.  That bubble is now sitting under your skin, causing your blood sugars to rise.  Then, when pressure decreases again suddenly, the bubbles gathered in the tubing can be pushed back along tubing forcing insulin into the body, leading to what they call 'Baggage Claim lows'.  And your pump will be none the wiser.

The easiest and best ways to cater for this are to disconnect your pump on take off, and priming and re-connecting once the plane is above 20,000 feet and levelling out, because it is better to be absent of insulin for 30 minutes than for those bubbles to make their way down your tubing leaving you with 2 units of air at the end of it.  And when the plane starts to descend, do exactly the same, to avoid any bubbles lodged in the tubing pushing insulin back out again.  Voila!

Keeping Insulin Cool

Insulin is only guaranteed to be 'stable' for 28 days when out of a refrigerated state.  After that time it may well still be OK to risk on a personal use basis, but if you are using a three-month old supply and it doesn't seem to be touching the sides anymore, this could well be the reason.  I've only ever been away for 2 weeks before, so this is the first time I've had to consider how to keep my insulin supply cool for the second month - particularly as we are primarily camping and using hostels in major cities.  I use between 50 and 70 units a day, so am catering for 1 ml a day, just to be safe.  That means I will use a 10 ml vial every 10 days.  We are there for a total of 65 days and I will take 2 spare bottles.  You know, in case of Armageddon.  That means I need to take 8 x 10 ml vials with me.  Three of those I can keep out, because I will be using them in the first 28 days, but the other five I need to keep cool while not in use.  But how, when rocking campsite chic in the deepest darkest 'nowhere' in New Zealand?

Frio have an ingenious cooling bag designed for exactly this little conundrum.  The bags are effectively like little picnic cases, and can keep insulin cool for up to 45 hours by immersing the pack in cold water for as little as 5 minutes (depending on pack size).  So every couple of days you can dunk and go, keeping your unused insulin cool for that time.  Perfect!

Loan Pump

My pump quite literally keeps me alive.  It is my most precious possession, even more that my beloved phone or laptop.  But it's also just a gadget: a gadget which breaks. If you use insulin pens with background insulin, then you have a good 24 hours before you would be in a situation of dire medical need.  With a pump, the moment I pass the three hour mark after I unhooked, my body is without insulin and my blood sugars are already starting to rise.  Being without my pump is not an option, and although I am taking pens, syringes and insulin bottles in case the worst should happen, my preferred method of insulin delivery is my pump. If nothing else then to enjoy the trip without doing battle with my bloods sugars, or sitting out of activities because I feel ill.

Most, if not all, pump companies now offer loan pumps, which is a spare working pump you can take away on holiday with you at no cost.  Before you go, take a photo of your current pump settings, so that you could programme a new one and bam!, you're covered.

Just contact your insulin pump company a few weeks before you go and ask for a loan pump.  Any company worth its salt will have you one in the post within days.

Knowing what's around you

Although I haven't needed a hospital trip for my diabetes in the last 20 years, it's a good idea never to get cocky with diabetes.  Only two years ago I found myself on the kitchen floor hallucinating about people being in the house as Jamie called an ambulance, because I was terrified and suffering too aggressive convulsions for him to get the emergency glucagon into me.  One little repeat of that, and our trip could be cut horribly short with an emergency hospital stay. 

I discovered an app called 'Camper Mate' which is a smart phone app showing you at a glance what is near you in NZ, from petrol stations to free camp grounds, or hospitals. If anything was to go wrong - if we lost my medical supplies or had them stolen by a wily Hobbit; if I was fighting an infection and blood sugars were uncontrollably high, whatever, this app will help me locate nearby hospitals and doctors, and help me feel safe whilst making memories of a lifetime.


The person with diabetes who goes away to an unfamiliar country without medical insurance, is a fool.  In Europe we have the benefit of the EHIC card, which can get you free medical care at the point of access, but this doesn't work once outside the borders of Europe.  But medical insurance, once you disclose type 1 diabetes, can go from 'pricey' to 'cancel the trip' status.  I'd always heard that Diabetes UK offered affordable insurance, so called them up for a quote.  Much to my horror their Gold Standard package was a jaw-dropping £456!  Sinking to their bronze cover was still going to cost me £318, and now came with a higher £70 excess and dropped personal belongings cover to well under £2000, although medical was still £10,000,000.

On the advice of fellow PWDs, I dropped by Insure and Go, and was astounded when they offered me £10,000,000 medical, £2500 personal belongings cover and only £75 excess, for £156.  That included 15 days worth of 'hazardous activities' and full coverage of my type 1 diabetes.  And did I mention that covers Jamie and his working pancreas, too? It's a no brainer!

Insulin Pump insurance

Until recently it hadn't occurred to me to get my pump insured, because as I wear it 24/7 and any problems I've had in the past have been mechanical or damage covered under warranty, the pump companies I've used so far have switched them out within 24 hours.  But on this trip I'll be taking a loan pump, and although my pump is waterproof I may make the decision to remove it during any activities where it could risk being damaged.  That means if anything were to happen to either my own pump, or the loan pump, I would have to pay for a new pump.  And they are a complete steal at £4,000 each! As I rely on it, quite literally, to keep me alive, I didn't think the £6.99 policy with Insurance 4 Insulin Pumps was all that bad - especially as they cover loan pumps and worldwide travel.  Some home insurance policies will cover your own pump, but as someone without my own home insurance, and with a loan pump to care about, this was yet another obvious choice.

And finally...

Continuous Glucose Monitoring with the Vibe

I have been a fan of Dexcom CGM since before I started using it, and deeply in love with it since I first hooked up.  I also use a Vibe insulin pump, and although I had to step away from integrated CGM recently due to one too many overnight hypos waking me up with the pump vibrating violently at my hip, I don't want to take any extra equipment than I need to.  The idea of this trip is to 'scale down and live it up'.  So for the two months I will be away I plan to integrate CGM into my pump, so that I have one less thing to carry.  And as the handheld unit costs around £975 in the UK, I think I can deal with the CGM alarms buzzing away at me for just a little while.

Life with type 1 diabetes is about finding a balance between planning, reacting, damage-control and the odd 'hands in the air' moment of confusion.  But the purpose of all this is that when Jamie and I take that honeymoon we've always dreamt of, and will tell our children about, we can say we enjoyed every second.  The planning is so that when faced with these views, diabetes fades away and experience takes over.

Saturday, 8 November 2014

Animas Sports Weekend 2015: Registration has opened!

It's that time again, when people with diabetes across the country dive for their laptops to get their registration request in for one of the biggest weekends in the diabetes calendar in the UK.  It's the Animas Sports Weekend 2015!  

The weekend is an opportunity for people with a love of sports, or those wanting to know how to manage the diabetes beast in order to try it out.  The first year I went, I hadn't exercised property in years.  The last time I exercised was two days ago, and my blood sugars stayed between 4.5 mmol and 6.7 mmol throughout my hour-long session. That's on the Animas and Dr Gallen team, having given me the tools knowledge and confidence to exercise property.

Whether you just want to be able to take a gentle stroll with the kids, or want to run an ultra-marathon, this weekend will give you the tools to start on your way. It is run by Animas (but open to people on all manners of treatment) and headed up by Dr Ian Gallen, who helped Sir Steven Redgrave train for the Olympics after being diagnosed during this run of Gold-medal achieving accomplishments.   Sir Steven was kind enough to give Insulin Independent this glowing review of the work Dr Gallen does:

"When I was diagnosed with diabetes and thought that my sporting career would have to
come to an end I was absolutely devastated.  But with the support of Ian Gallen and his team, I was given the confidence to carry on with rowing and I was able to stay at the same level that I was at before having the condition; going on to win gold at the Sydney Olympics 2000.  I came up with the quote "diabetes has to live with me not me live with diabetes."  And that has stayed with me ever since in whatever I do in life."

Added to this already impressive set-up for a weekend, the event also offers the opportunity to meet and have an amazing time with other people with diabetes. That, in itself, is reason enough to go.  Often I hear people say they want to get fit before the weekend starts, because they are put off by the sounds of the activities.  But the weekend goes at your own pace, is full of people with completely varied levels of fitness, and is solely for the purpose of learning.  And as the fun from the activities subsides, the laughter moves to the lobby where there are guaranteed to be a troop of people propping up the bar into the early hours as they swap comical hypo stories, put diabetes to rights and form bonds that will last year after year.

So, I look forward to seeing you there! Just email to register your interest

Sunday, 19 October 2014

CGM: A happy distance

Since the first time I inserted a Dexcom sensor and saw my 5-minutes-apart glucose readings flash up on the screen in front of me in real time, I have never looked back. It was a commitment, deciding to self-fund the arguably expensive tool to manage my blood sugars, but a sacrifice it was not.  My choice to use CGM wasn't about the SafetyNet it provides, although that is a selling point in itself. Instead, it filled in the frustrating gaps I experienced when trying to gain better control.  

Going all non-integrated, again.
But last night, as I pulled myself firmly into the back of my peaceful sleeping husband, matching my shape with his, and trying to improve the already bad night's sleep I was having, my Animas Vibe, now having my CGM readings integrated into it on an almost permanent basis thanks to the convenience that brings, started to violently vibrate in the small of his back.  He awoke with a fright, and patient soul as he is simply asked, "Are you OK?"   It was the third hypo of the night, and it was the third night like this in a row. As tired as I was of treating hypos, I'm sure his tiredness was greater still.  He didn't even need to be awake.  A safety-net it is, but a sleepless night and being awoken by the endless buzzing beeping and frightful noises of the Vibe were enough for me.  I treated my hypo - a slight dip below 4.4 mmol - and turned my CGM function off, leaving the redundant but brand-new sensor in my arm. 

This morning I decided to switch back to my handheld receiver.  The downside being that I have to carry yet another device with me.  But the benefit being I don't have to keep it attached to myself, or my long-suffering husband, for a little while.  I quite often don't hear the initial beep or vibrate of a first hypo warning.  And quite often, my blood sugars are simply nudging above and below the alarm line.  That way, a slight drop in blood sugars which was always going to correct itself doesn't need to be the frustrating interruption it sometimes needs to be.  And my husband can sleep easy.

And sometimes, we just need a break from it all.

Friday, 10 October 2014

The cure? Could it be?

Diabetes 'cure' stories are ten-a-penny these days; as a routine today as collecting your prescription or brushing your teeth. Some hinge on theories or ideas still decades off materialising into anything tangible. Others - okra-cocktails and vegan-raw-superfood diets - are simply hokum. I barely register them anymore, because the psychological bashing that allowing yourself to believe that the rigmarole and emotionally-draining long-term management of a chronic condition could be over, is a bashing I am happy to forego. 

But this morning, as I stood over respectable broadsheet 'The Times' laying on the pile of newspapers at the corner shop, reading and re-reading the title, my heart started to thump a little faster, and I was oblivious to the world around me. 

"Diabetes: a cure at last" it read.

I'd seen a photo of the headline in my Facebook timeline and for the first time ever, had made the effort to pick up a copy and take a closer look at the research. In the past efforts to cure diabetes have been dogged by issues. Islet transplants overshadowed by the need for anti-rejection drugs and limited lifespan of the cells once transplanted, not to mention the 3-4 donors (passed-away people) need per diabetes patient. Stem cell researchers needing to did a way to tailor cells to each individual patient, a task so major that those diagnoses would outweigh cured patients at a rate of knots. And then there was the 'bio-hub' fiasco. A great idea, but little more than an idea, pulling at the heart strings of parents and adults desperate to see an end to diabetes. If was no more than a funding drive, aimed at bringing in the dollars before it could get underway. 

The story in today's paper, was different. It wasn't an idea. It wasn't a piece of research now setting our to address the many anomalies they identified. It wasn't a funding drive. It is a piece abut the success scientists working at Harvard - already 23 years in the making - have seen in identifying a strain of genetically modified stem cells which can be transplanted into ANY person with type 1 diabetes, and 10% of people with type 2, in large enough quantities to eliminate the need for insulin. The cells, protected within a proud capsule (think bio-hub, only already in existence) allowing them not only to be protected from immune attack, but also removed quickly if they were to stop working. The study did say that it would be a number of years before we would be using this routinely in patients, but that it is already in final non-human primate trials, before human trials begin.

Could it be? 

What's more, the article tells of how one of the lead scientists, Professor Doug Melton, chose this field of research when his son was diagnosed with type 1 at six months old. Later, his daughter would receive the same diagnosis. I liked this guy already, now, I really understand his passion. 

As I sit here in my car having thumbed through the pages of the article, my CGM alarming to tell me that my glucose levels have gone over the range I need them to be in today already, the idea that there may be an end to this one day is a dream. It seems possible, but in the murky, strange way a dream does: moments of vivid clarity followed by moments of 'naaaah, it can't be'. 

I will let the human trials commence before I let my mind set on the idea of one day not having to worry and fret my way through each day, living a life dictated by numbers, portion sizes and thinking about the future in all the wrong ways. What's more, the idea that my children, who one day may face the same diagnosis, may avoid the decades of injections, food measuring and finderpricks I have, somehow gives me peace. 

I hold on to hope. 

Friday, 3 October 2014

The rough(ish) with the smooth

I'd known when my consultant handed me my blood test forms, with a few more boxes ticked than I care to think about, that my latest set of results were not going to fare all that well.  My recent wrist operation, teamed with a trip abroad and countless (wonderful) hours at the computer arranging the Adventure D launch weekend, mean I have been wildly inactive in recent weeks and have been relying on fast food. And I know what that means for my HbA1c.  

As I approach my mid (arrrrghhhh!) 30s (wait, WHAT!) I consider more and more how I might approach a pregnancy one day, and know that in order to vastly reduce any risk of the endless list of complications thrown as us PWDs with an achey baby-maker, I know that ideally I need to get my HbA1c down towards the 6mmol or below mark.  You would think that with CGM, a pump and my knowledge of which foods do, and don't, work as well for me, I would be able to nail this. Not so.  My approach to managing the busy events of my life of late has been to use my CGM as a safetynet, my pump as a justkeepmealivegoddamnit tool and my diet has been, well, let's not even go there.

My penultimate A1c result was an attractive 6.4%.  My latest was a somewhat less-so 7.6%.  

Normally 7.6% wouldn't concern me greatly, but it highlights for me the battle that wannabe mothers have on their hands, and that no amount of 'getting by' will suffice when considering motherhood with type 1.

And it's back to the drawing board for this little goof-off.

Saturday, 20 September 2014

Adventure D launch weekend!

On Friday morning 12th September 2014, after a night of minimal winks and maximum anticipation, my brother, Chris, and I made our way to CYE sailing center in Chidham West Sussex, for the inaugural Adventure D kayaking weekend!  The two day event in impossibly beautiful surroundings, would see eight fabulous people with diabetes, including Claire Pesterfield, a type one herself and diabetes specialist nurse to boot, along with a team of volunteers and instructors, take the attendees from 'never been in a kayak' to having advanced skills and being equipped with the knowledge of how to kayak safely.  

As the group started to arrive, any fears or nerves we had about the weekend slipped away as the smiling, keen faces of the fabulous group getting to know one another showed us that this was going to be a great weekend.  The weather was idyllic, the harbour was still and the gentle murmur or friendships being made set the relaxed pace for the weekend. We settled after our carb-counted meal and learned from Claire how we might adapt insulin and food intake for the water-based sessions the next day.

Saturday saw the group take to the water, starting off in practically unsinkable 'sit-on-top' kayaks, to learn about strokes, boats and safety.  Throughout the day were relaxed but regular breaks to allow for blood testing and tweaks to insulin or carb intakes here and there, and grow in confidence on the water.  The sessions ended with games - transforming the once-cautious sit-on-top users to competitive kayakers, losing any inhibitions they had in order to smash the other team out of the game, all the while donning fully-fledged Pyranha kayaks, and pulling out some professional moves in order to win the ball, catch the 'robber', or make it through the finish line first.   The laughter resounded through the harbour we called our own. Watching from the sidelines, this was the Adventure D dream come true, playing out in front of us.

After a delicious home-prepared and carb-counted curry, the group made for the local pub to share a drink with their new-found friends and to re-tell their favourite moments of the day. It was without doubt one of my favourite moments of the weekend; watching budding kayakers become friends and for some of the group, mix with fellow people with diabetes for the very first time.

Sunday saw the group of kayakers, now confident on the water and ready to put their new-found diabetes knowledge to the test, take to the water, keen and excited.  As we journeyed through Chichester harbour to the beautiful sights of Bosham, the instructors gushed about what a delight it was to teach this group. The Adventure D group.

As the Sunday came to a close and the Adventurers told us how they wanted to buy kayaks, had grown in confidence or didn't want to go home, we knew they had enjoyed it as much as we had. Every. Single.  Moment.

When I think about the first time I tried kayaking, a smile creeps across my face, and I can almost feel the warmth of the sun and the spray of the saltwater on my skin.  It was a clear day in late summer, there was no wind to speak of and the water in the harbour glistened as the rays bounced off the gentle undulating waves as the water ebbed and flowed.  That day was good.  This weekend, was perfect. 

Thank you to the wonderful people who joined us for the weekend, and made the event such a success.  Here are your best bits :)

European Blogger's Summit: how YOU can get involved!

Last year I was lucky enough to able to attend the European Blogger's Summit in Barcelona because of the work Insulin Independent has done with Animas (hosting the event) over the past 3 years. It was an insightful and informative experience with fascinating information on how to increase traffic to blogs, but as a group the overwhelming feedback was that we wanted to really open up a dialogue with each other about the local challenges faced by our respective communities; communities which once a year are stripped of their geographical boundaries and amalgamated into one truly global community. This year, Animas gave us a day, several pots of coffee and a place to talk: the rest came down to us.

What became overwhelmingly clear as we came together and began to talk about the challenges was that while we often face many of the same general hurdles - like access to medical technology, political battle or stigma - the ways in which those challenges play out locally, can be very diverse.  The purpose of this meeting was to share our experiences with each other and this year the question which repeatedly raised its head as each blogger took to the presentation stage was this: is there a way you can help us?

But as diverse as the group of people who came together were, we are by no means a true representation of the diabetes community.  We are just a few faces of a community whose reach expands across the world.  So rather than just give you a run-down of the topics we covered, this post is about how YOU could also get involved. 

Spare a Rose

First up Kerri Sparling talked about the Spare A Rose campaign which took the online communities by storm earlier this year.  The idea behind the campaign - started by Partnering 4 Diabetes Change (P4DC) and supporting the International Diabetes Federations's (IDF) Life for a Child movement - is that during the highly commercialised event of Valentine's Day, rather than buying a loved one a dozen red roses, instead give the 11 roses, and give the equivalent cost of one red rose (around $5) to the Spare a Rose campaign, which, through the IDF, provides insulin ad education to developing countries where not only is insulin desperately hard to come by, it can keep a child alive for a month - just for the cost of one red rose which may wilt and die within days.  Spare a Rose started in America in 2013 and raised an impressive $3,000 in its first wave.  But by Valentine's day 2014, it had raised over $24,000, involved more than 24 countries and reached around 8 million people via social media attention.  Just imagine what it could do in 2015?  So if you tweet, blog, give to charity or feel passionately about the situation in impoverished countries and realise how lucky we are to have a butter compartment stocked full of life-giving insulin, then please give whatever exposure (or donation) you can to #SpareARose.  


From Italy we learned from Biagio Barletta that they had been working tirelessly on a campaign to educate and awareness raise about life with diabetes, using Twitter as a platform for change.  On the back of the incredible #ShowMeYourPump campaign started by Miss United States of America hopeful Sierra Sandison (Idaho) which took the world by storm during the Summer of 2014 and saw people 'outing' their pumps in a bid to break taboo, Italy are going one step further.  They ask that every day you post a picture on Twitter of YOUR life with diabetes; what it means to you.  Do you use a pump?  Can you share a fact?  Do you want people to know what a blood test looks like?  Then do it, using #ShowMeYourDiabetes.  Make the world see what diabetes really is.  

Parliamentarians for Diabetes Global Network

Renza Scibilia, representing Diabetes Australia as well as her blog, Diabetogenic, talked about Parliamentarians for Diabetes Global Network - an advocacy programme established by the International Diabetes Federation (IDF) in December 2013.  Renza asked bloggers to highlight this Network of parliamentarians who established eight global aims which, amongst others, include eliminating stigma towards people with diabetes, encouraging governments to make active efforts to meet targets set by the World Health Assembly, to provide a platform for dialogue and to work towards urgent action.  How can you do this?  Through the power of your local Member of Parliament.  By linking with them and highlighting the urgency, need and global importance of this network, we can show them why the PGDN is a commitment they can, and should, make.  The Network is only open to parliamentarians so the power is within our hands to bring this powerful and potentially influential network onto the radar of parliamentarians. 

Bringing community for people with to Germany

Ilka and Finn from Mein Diabetes Blog, and Tine from I Can Eat Everything were taking part on behalf of the fast-growing influential German diabetes community, and Ilka presented about the lack of events and come-together occasions for people with type 1 in Germany, and the isolation she felt on walking into an event for diabetes, and being the only person with type 1.  Ilka demonstrated the power of the diabetes community when she approached sponsors to ask for  funding for a diabetes event specifically for people with type 1, and a few months later arranged an event attended by over 180 people from across the country. So if you want to get involved in more events for people with type 1, keep an eye on these  blogs.  Ilka also spoke about the changes going on at MySugr headquarters and new developments of the already wildly popular app.  They look like they could truly make waves in engaging even further with their communities, so keep your eyes peeled!

Adventure D, peer reviews and psychosocial support for people with diabetes

And finally representing the UK The Grumpy Pumper's Chis Aldred and The Understudy Pancreas' Annabel Astle told of their extensive work in the last year with Diabetes UK, JDRF and healthcare professionals in the NHS to help shape services and education.  In particular, Annabel spoke passionately about the Peer review processes she had been involved with to look at the diverse experiences of paediatric care and services in the UK.  

I presented about access - or lack thereof - to psychosocial support within diabetes clinics, and the way in which people experiencing any psychological challenges have no clear path with which to access services available within the  NHS.  This is a project with Ninjabetic's Laura Cleverly at the helm, and the project is so very in its fledgling form that I am not yet ready to share what the next steps are for us locally, but as was intended with these groups, we were already able to learn from the global communities around the table about how they had started these processes within their respective communities.  So watch this space! 

And finally, I told the group about the success of the Adventure D launch weekend (more on this, later).

As the summit drew to a close a list of actions were compiled and plans agreed as to how to move our respective projects on in the coming weeks and months.  

It's not often the  global diabetes 'online' community can come together to become  a global 'offline' community, but when it does, it is a powerful thing. And as the mandatory group shot was taken and the event came to an end, a promising future of global focus on local challenges was emerged.

Friday, 5 September 2014

Finger sticks and spurting capillaries....becoming obsolete?

When I was 9 years old, I punctured the tip of my middle finger for a routine-as-rain blood test.  But this one was a little different.  Rather than the usual prick-squeeze-apply, I had managed to pierce a capillary and when squeezing the finger to produce my tiny drop of blood, managed to inadvertently spatter blood right across my face, Tarantino style.  As I looked in the mirror, horrified, I couldn't yet have known that one day, while watching the film Kill Bill, Uma Thurman's face would remind me of my nine year-old, freaked out own.  Looking back now I see the humour in that.  At nine years old, that 'funny side' escaped me.

In my diabetic lifetime I've done an average of 70,262 blood tests, and as Kerri Sparling's recent post about why she now changes her lancet regularly demonstrates, this takes its toll on the nerve endings and circulation in my fingers.  The beauty of my Dexcom is that only needing two calibration tests a day, this number has rapidly dropped off.  But nevertheless, I always dreamed that one day there might be a different way of doing things.  A less, 'spurty' way.  Well, Abbott have found a way with the Freestyle Libre Flash Glucose Monitoring System!

The Libre works by inserting a small coin-sized sensor into the skin on the upper arm, and placing the receiver next to the sensor for just 1 second, allowing it to pick up the current reading glucose reading from your interstitial fluid.  It's not strictly 'CGM', in that there is no continuous reading, and there are no alarms to alert for highs or lows, but there are trend arrows to indicate the direction of glucose travel. The growing buzz on the internet forums however, is that this would allow users to gain so much more information in a much less invasive way, and that it is very much the next best thing.  Sadly it won't completely remove the need for testing as tests should still be done to confirm lows and highs, but even that is an enormous step forward to permanent bloodless testing.

Early (unconfirmed) reports suggest the system will retail at £150, with sensors costing £50 for 14 day wear, although this has yet to be confirmed by Abbott themselves.  But InPuT have reported that CE marking has been achieved and they have been invited to a release event, so rather than being one of the 'blue sky dreams' we read about as being 'just around the corner', the Libre system seems to be set for public use, very soon.  All that is awaited is release of the MARD (Mean Actual Relative Difference) data to show the accuracy of the device. MARD is calculated by comparing BG meter readings with laborartory standards. A lower MARD value indicates smaller difference between meter value and the reference value. Higher MARD value indicates larger difference between meter value and the reference value.

The only downside at the moment is that it will only be licensed for those over 18 meaning the hopes of parents that they will one day be able to stop puncturing their children's fingers, is yet to come.  I would have no doubt however, that Abbott are aware of how much this product will appeal to parents, and that bringing it to market for paediatric use is a goldmine waiting to be blown open out of the mountainside.

Check out the Freestyle Libre video below.

All in all, it looks a promising signs for fingertips!

Monday, 1 September 2014

The InPuT team goes airborne!

It's no small secret that my favourite charity in this country is InPuT.  Led by patients, for patients, they are exclusively the UK's only charity increasing access to medical technology.  The team, made up of just two paid members of staff, Lesley Jordan and Melissa Holloway, aim to increase people's awareness of their rights to medical technology, and to advise them and guide them through how to obtain it, often giving them the key language and legislative knowledge which will allow people to speak to healthcare providers in a way they understand and will respond to. They also provide a key and impactive presence in parliamentary groups on diabetes and medical technology.

In 2012 I helped out at the series of roadshows the team put together, and saw first hand the powerful work they do, when a hope-lacking and frightened lady with type 1 explained that she no longer drove her car because she was so afraid of hypoglycaemia (low blood sugars).  A little InPuT advice and a letter to her team later, and she was placed on pump. Her heartfelt thank you letter said it all: that the UK needs InPuT to continue the work they do.

I've also seen how they work to keep their costs down and put the funds exactly where they should go.  Volunteers are encouraged to car share or take pubic transport to any events, and if Lesley can find a better deal for something the charity needs, she will find it.  In a world where charities come under fire for gratuitous expenses and disproportionate 'necessities', it is inspiring to see how dedicated InPuT are to what actually matters.  It is refreshing to see, and a privilege be part of.

This year InPuT need to raise funds in order to keep their dedicated service reaching as many as they do, so both Melissa and Lesley decided that there was only one thing for it: show their dedication to the work they do by jumping out of a plane!

Like this only muuuuuuuch higher up...
This coming Friday, 5th September, the InPut team (minus me, because I'm an enormous pansy-shaped flower) will be sky-diving their way to the ground in order to raise the vital funds they need, and they need YOUR help!

Check out their fund-raising pages here and here, and donate even £5 to help people access medical technology. 

Tell me, how much does your insulin pump or continuous glucose monitor mean to you?  Now imagine if your donation of just £5 could help someone else struggling to get one?

I've donated, can you help out too?

Thursday, 28 August 2014

Adventure D launch: come and be part of it

When I fist posted about the start of Adventure D, a project my brother, Chris, and I had started, we were taking a gamble as to whether or not people would agree with us that people with diabetes should have more opportunities to get shoulder-to-shoulder and try adventure sports.  As it happens, we didn't need to worry so much.

Our first weekend, a Learn to Kayak weekend, being held at CYE Sailing Centre in Chichester Harbour, is filling up beautifully...but there s still space!

To explain a little more about the weekend, it is a learn to kayak weekend on 12th - 14th September, which will take you from basic to advanced skills, with freestyle games sessions included using the techniques you've developed.  All equipment and tuition is covered in the cost of the weekend so you would just need to bring yourselves and some basic personal must-haves which we can tell you more about.

The weekend will include a talk on exercise and blood sugar levels from Lead Diabetes Specialist Nurse Claire Pesterfield, who has type 1 herself, and who has climbed Mount Kilimanjaro!  She will give advice and information on the effects kayaking is likely to have on blood sugar levels, to give you an idea of what changes you may want to consider making to your insulin dosing.  This will be put into practice on the Saturday and Sunday across three sessions.
Food is all covered in the cost and will also include any hypo treatments you may need over the weekend, as well as there being 'hypo stations' in case sugars drop throughout the day.  The food will also be carb-counted to make everything just that touch easier. In the evening there will be some free time to explore local pubs or chill out in the 'snug' which is a mini cinema style room on the ship.
The accommodation is amazing and probably unlike anything you may have seen before.  You can see photos here, at the bottom of the page. The TS Resolute is a multi-purpose floating accommodation vessel with two decks; the lower deck containing the accommodation and snug (cinema) and the upper deck housing the conference room with 180 degree views out over the harbour.  Rooms are new, clean and bright, and all have en-suite facilities.  The cabins have ample room for two people to a cabin (which will be single sex unless you know each other and choose to stay in a room together) allowing you to get to know other people with T1 from the moment you arrive. 
The cost of the weekend including all the above is £150 pp which, as mentioned, covers tuition, accommodation, food and the informative talks.

There is still space so if you feel like joining the group for a fantastic weekend, just get in touch at

See you there!

Friday, 22 August 2014

Sweaty palms and monster spikes: what stress does to diabetes

I did my best to pretend to the surgeon operating on my wrist that I was fine, even taking the opportunity to look at the exposed tendons in my cut-open hand moving around as I wigged my fingers, but my dry mouth and twitching foot gave me away as a fraud; the surgery was stressing me out.

'The Club'
If you were to ask me what the most impactive factor is on blood glucose (BGs) I would tell you  carbs, illness and stress, in that order.  And yet very rarely do I have my eyes open to it when a stressful day at work leaves me snapping at the heels of 20 mmol.  Or when my BGs go ape-shit when I travel.  I usually blame it on the food.  And likewise, when I tell myself that the week off work I just had was nothing to do with why my levels are better than that of a non-diabetic.  It must be a stroke of luck.

Two days ago as the Queen Alexandra hospital kitted me out with 'the club', my BGs stayed between a beautiful 5.4 mmol and respectable 8 mmol all morning.  Even during and immediate after surgery they were dancing gently around 6 mmol.  But an hour later, as I tried to figure out how a simple mocha could have me flying vertically upwards that I remembered the sweaty palms that gave me away in surgery, and realised that no coffee in the world could do this:

If ever I needed a reminder of the impact stress can have, my trusty CGM was happy to oblige!

Thursday, 26 June 2014

Animas Sports Weekend 2014...

I've been talking about what an incredible experience the Animas Sports weekend is for two years in a row now, and you can find my rave reviews here, and here.  This year, I wanted to shake things up a little.

This weekend is one of the most looked-forward-to events in the diabetes calendar, and I'm running out of ways to say how great it is.

This year the talks were incredible, the people were inspirational and the weekend as ever, was one you don't want to miss.

Thank you to all the incredible people who let me have access to their photos, including all the twitter folks, Animas and Rachel, for letting me show you what the weekend is like through everyone else's eyes.

So check it out, here.

And for Triathlete Terrence Teixeira's top 3 tips from the weekend for understanding diabetes and sports, check out his video here.

Tuesday, 17 June 2014

An ode to the Olympics

Two years ago when I started to have regular fun and games (see also: swearing and rage) with kinked cannulas, I made the decision to try out the Medtronic steel cannulas.  Rather than being most people's nightmare because of the idea that you might feel them under the skin (you can't), it took just a couple of weeks of before I made the switch on a permanent basis.

I loved the fact that as they are removed after just two days and were so much more narrow than the Teflon needles, there was always much less scar tissue left after it was removed.  And the purple marks people talked about seeing after removing the Teflon needles seemed like a thing of the distant past, to me.

Perhaps the issue is just that in order to use my steels I have been using my abdomen for every cannula, but I feel like I'm starting to resemble the Olympic rings.  Right?

With an inkling over the last few weeks that burnout may be approaching (**rips off own pump and goes to hide in garden shed for a day with a pint of ice cream**), I've put in a sharpish order for some inset IIs (Teflon needles that could park themselves on my back or arm).  

Why?  Because as PWDs who have choice (even if that choice is limited) over the tools we use to manage our diabetes, and it is my prerogative (and sometimes a survival technique) to shake things up and change my form of attack.

For a long time I didn't mind using my abdomen for cannulas.  It worked for me and the lack of kinky (oo-er) issues kept me kicking the crap out of diabetes without a second thought.  But it's OK to reach an impasse and say, "This isn't working out, anymore" and make changes that will help you feel ready to take on another day with diabetes. Diabetes paraphernalia is something unavoidable that we have to live with as PWDs, so we might as well make that paraphernalia work for us.

Have you changed your paraphernalia to make it work for you?

Monday, 16 June 2014

CGM Sensor Crunkiness

I'm glad that Jamie understands the value of CGM in my life.  Since adding it to my diabetes arsenal 18 months ago it has whipped away an incredible amount of the worry and frustration I had been feeling with increasing frequency in recent years (See also: Buuuuuuuurrrrrrn.  Oooooout).   It is my safety net; my road map. But because CGM funded full time (using on-label guidance) can cost the equivalent of a monthly payment which would buy you anything between a second-hand VW and a brand new Beamer, I had to find a way to make full time CGM use work for me, without bankrupting us.  

Thanks to a well-timed promotion and a determination to lower my HbA1c in the approach to parenthood (yup, we're heading thataway) I was able to commit to two sensors a month.  But only if I used them for two weeks at least, per sensor. I've been recording how long my sensors last and two weeks is an easy achievement in terms of time, but there is a drawback; the crunkiness.  

Only days after a fresh sensor goes in - the adhesive tape almost shimmering in photographs because it is so very white, and so very crisp - comes the crunkiness.  It is the point between 'crusty' and 'manky', when the tape has started to come away and re-sticking it with my sensor lengthening lifeline, Skintac, means the tape has turned hard and attracts fluff where no fluff should be able to get.  The surface of the once silky tape is now somewhere between sticky and solid, and it is pretty nasty.

This is the stage when I look in the mirror and thank my stars that Jamie understands the value of this crusty, crunky abomination, currently camped out like an unwashed squatter on my upper thigh.  If CGMs could suffer leprocy, mine has it.

Wednesday, 4 June 2014

Medtronic e-shop!

There are so many 'must dos' on the daily diabetes checklist that even the smallest of moves towards customer convenience is a big deal, in my book.  One of the greatest steps forward in my own management was when my GP Surgery started allowing online ordering of repeat prescriptions and appointments; no more queuing at the clinic for repeat prescription printouts.  And it would seem that Medtronic feel the same way.

Last week they invited a few blogger-type folks to their office in glamorous Watford, to tell us about the roll out their new e-shop for pump supplies and products, as well as introduce us to some new faces on the accessories front.  Now a word of caution first, don't leave this one to the last minute, because when you register it will take around 3 working days for everyone's people to speak to everyone else's people so that you can order. But once you are set up, your usual orders will be ready to simply select and go!

Any products and supplies already agreed by your team (ie the gadgets you usually order) will appear with the cost 'greyed out' on the screen, and these can simply be selected and placed in your basket ready to order.  Any new items you want to select will of course need to be run through your team first, although you can pay for items yourself, if you choose.

If there is every a problem with your order, Medtronic's (highly recommended) customer service team will call you immediately to advise you about any delays or issues in fulfilling your order.

Now, as someone whose diabetes team (lovely as they are) still employ a stone-age system of ordering via one specific nominated-for-the-job person in my diabetes clinic, be warned that this has to be an arrangement already in place with your team.  But if you think you could use this kind of cutting out the middle man in your already busy lives, give your team a call and make use of someone's bright idea to make life for their patients easier.


Monday, 26 May 2014

Adventure D!

I was 25 years old the first time I caught my first stand-up surfing wave.  I was exactly 3 seconds older when I came plunging off it.  But as impressive as my wipe-out was, that feeling of complete elation and (wildly exaggerated) sense of total accomplishment, is a feeling I believe everyone should have a chance to experience.

As a person with diabetes (PWD), surfing had its challenges: where to keep hypo treatments; how to adjust my insulin to cater for the increased exercise; how to cater for the adrenaline of that first wave.  But with a team of people around me clued up on what to do and when, it wasn't impossible.  In fact, I barely even remembered I had diabetes as I threw myself into the waves time and time again.

Adventure sports can be a daunting prospect for a person with diabetes. But it doesn't need to be impossible - far from it.  And that's exactly what my brother Chris, a kayak and sailing instructor was thinking when he first told me about his idea to set up an organisation that would allow PWDs to try adventure sports in a safe environment - one that was mindful of the challenges faced in trying outdoor pursuits with the added dimension of diabetes. He also agreed completely as I poured over how incredible it would be to have people with diabetes have a chance to meet, share their experiences ad try something completely new together, knowing they would be safe while doing so.  And that was how Adventure D was born!

Set up officially in February 2014, Adventure D weekends and holidays will always be led by people with extensive experience of diabetes or, wherever possible, with a Diabetes Specialist Nurse (DSN) as part of the leadership team.  That means you won't need to worry that your unique management style or personal needs will be overlooked in order to to keep pace with the group.


Adventure D will also offer the opportunity to get together with other people affected by diabetes, whether you have it yourself, or care for someone who does. 


Our launch weekend will be taking place between 12th - 14th September 2014, and will be based at the incredible and unique CYE Sailing Centre in Chidham Harbour, West Sussex.  Able to cater for 20 people in total, but with interest already flooding in, the weekend will take you from never-kayaked-before to having a developing set of skills.  It will also give you the chance to mix and mingle with other people with diabetes.  This weekend is best suited to people with type 1 as the advice on offer from the DSN leading the education programme on the weekend will be more applicable to those with type 1. But the plans for the first type 2 weekends are already in place!

And this is just the scratching the surface of where Adventure D is planning to go.  Already under way are 2015 plans for more kayaking, surfing, skiing in Europe, traversing the peaks of the Lake District, sailing and even climbing!

If you want to know more about Adventure D or would like to express your interest in a spot on the kayaking weekend or any of the other events we are planning, please check out the Website, Twitter and Facebook pages.

Register your interest now!

Thursday, 1 May 2014

Explaining the diabetes beast: the breathing analogy

I pride myself on being a professional diabetic, in that when an opportunity to educate, advocate or raise awareness arises, I take it.  Most of the time I am able to explain the processes, practices and pitfalls of diabetes with ease; it has been part of my life for 27 years, after all. But every now and then a certain loaded question leaves me unusualy unable to explain myself.  

"If you take your insulin like the doctor tells you, why do your blood sugar levels still go up and down so much?"

As infuriating as that question may be to someone with diabetes - someone who understands the illness and that it just doesn't work that way - it's not all together a silly question.  Let's think about it in terms of what everyday people like you and I - those without a medical degree -  know about illness: If you have an infection and take antibiotics, the disease goes away; If you have high blood pressure and take lowering medications, your pressure drops; if you have a headache and take paracetomal, the ache subsides.  Why then if people take insulin, do their blood sugars not stabilise?

The list of answers to that question is almost endless, with much not yet known about why.  We know that getting 'the right' level of insuln is a minefield in the first place, and that the impact of foods, exercise, emotions, hormones and even weather can often not be anticipated. But when I try to explain why diabetes is so complicated, my usually eloquent and articulate self becomes a bumbling mess of technical words and medical jargon.  In fact, if you are as unfortunate as my niece, you may even have heard my "Once upon a time there was an islet of Langerhans named Jeff" story.  To this day, she has no idea what diabetes really is. And I don't blame her.

So I've been asking myself how I could make some of the mystery of diabetes a little more explainable, and I think I have it: it is all about breath.  

Breathing is an automatic process in the body.  We don't need to think about breathing because our body, in all its complex beauty, knows exactly when and how deeply to breathe in order to keep us functioning properly.  When we exert ourselves, our body knows to increase how hard and fast we breathe, because that oxygen is needed throughout our body. Our brains tell the body that when we sleep, it must continue to breathe; when we run, it must adapt; when we rest, it recovers.  We notice it, but we don't control it.  The body  does this second-to-second, minute-to-minute and hour-to-hour, very successfully.  In fact, if you had to try and breathe intentionally (and why not give this a go for 5 minutes - take each breath intentionally and try to make them as natural as possible, while not letting the body make the choice for you) you would not be able to do it nearly as well as the body does.  If you sit very still you may manage what you think is steady breathing, but there will be subtle differences between each breath you take; one will be longer than the last, the next will be deeper than the first.  Then, add in some complications such as exercise, and you now have a battle on your hands.  Try to do this while you are at work, at a party, in a supermarket or while reading a book, and it would be near on impossible.  Before you know it you would be gasping for breath because you didn't take in enough air, or would tired from the constant thinking about how much and how often you should breathe.

To me, this is the same as diabetes.  What has gone wrong in our bodies is that the automatic process of blood sugar management which in a healthy body - just as with oxygen - ensures that the correct amount of glucose gets around the body, is broken. Insulin is the intentional beathing we are trying to do to keep our breath (blood sugars) as stable as we can, but trying to mimic any process that the body does so well automatically, while external factors such as exercise, food, emotions and hormones pound our decision making and moving the proverbial goal-posts, means that blood sugars can never be controlled completely.  Our brains do not send the right messages. If we sat still in a room with no influences complicating things, we would possibly be able to keep those glucose levels as natural as possible, but somewhere in amongst all the focus on blood sugar levels, we have to live a life.  We need to go to work; to concentrate on that book; to go to sleep.  We cannot be consumed by the task of managing blood sugar levels. We can get close to stable blood sugars, but there will always be times when we are simply unable do as good a job as the body would have done, even with insulin.

So how do you tackle this topic when it comes up so that people aren't baffled by why insul does not simply equals stable blood sugars?  And if you are someone without diabetes, does this make a little bit of sense?

Monday, 28 April 2014

Here come the Summer!

...which for a diabetic can mean only one thing: the low blood sugar chronicles are afoot.

There is a myriad of reasons why blood sugars rise and fall. Some days can be a whodunnit of usual suspects in the blood sugar battering game; other days the culprit is glaringly obvious. But it is usually this time of year that I know for definite that summer is on the way. Despite the usual moanings and groanings from the dismayed British people that our summer offers only drizzle and countryside mist, my blood sugars are the tell-tale sign that the country is indeed warming up. 

I love Summer. And I love the sun. But heat has always been a game-changer for me when it comes to low blood sugar levels. Everything from how often they happen, to how to predict them, becomes a battle of (near) epic proportions. 

Someone once told me it's because the body gets hotter and capillaries open wider in order to cool us down. That in return gets insulin pumping through the body much quicker, causing frequent and unpredictable hypos. I'm not sure if that's true or not (any ideas?), but either way, it's time to get the sunscreen out people. Summer is on its way. 

So if we needed any sign that the Summer monsoon is a-comin', my CGM trace suggests a big old yes. 

Sunday, 20 April 2014

A mother's response to Matthew Wright

My mother, Christine, is my greatest role model.  Strong, reflective, vulnerable, open and generous beyond words, she too felt the effects of Matthew Wright's recent verbal assault on the diabetes community.  And she was kind enough to put into words how his words - and the bigger problem they represent - affected the mother of someone with diabetes. Here is her beautiful guest post.

Anna has wanted me to write a blog post from a mum’s point of view for some considerable time, but it was Matthew Wright’s outrageous sound-bite about “diabetes-triggering chocolate Easter eggs” that has at last galvanised me into action.

At the tender age of “just-turned 4” my blonde, blue-eyed, slim daughter had not spent the summer sitting around eating chocolate and watching TV but had returned bronzed and happy from a 5-week family holiday in the Austrian Tirol – where at the age of “still only 3” she had walked up mountains (once to glacier-level) every other day and, to the utter astonishment of the local tourist board, had completed enough walks to earn herself a gold “Wanderpass”.

Just 3 months later, on Christmas Eve, I drove my semi-conscious, critically hyperglycaemic daughter to hospital while my devastated husband stayed at home wondering how he would find the heart to “celebrate” Christmas the next day with our 2 sons. 

Within a year of Anna’s diagnosis of Type 1 I had the opportunity to attend a week-long conference in Kaiserslautern, being both cared for (yes, we mothers need looking after as well) and educated about Type 1 along with 30 other mothers and their newly-diagnosed D-children. The age of these children ranged from 18 months to early teenage and not a single one of them was overweight. 

Every one of us mothers, however, felt both guilt-ridden and confused that their beautiful child had developed Type 1. We were all asking why – where on earth had this come from? Of the 30 children only one had a living relative with Type 1 – the 18 month old baby girl - and her desperate father (the Type 1) was so devastated - because he thought it was “his fault” - that he couldn’t yet inject his baby daughter with her life-saving daily insulin.

In amongst all the heartbreak and guilt the various reasons we mothers were putting forward as having been the trigger for the Type 1 were variously stress, shock, the coxsackie virus, a recent immunisation against measles and mumps and bereavement. Guilt, fear and lack of information is a toxic combination. I was soon convincing myself that I had over-stretched my 3-year old and that in fact the 5 week holiday and the gold medal had stressed her little body so much that her insulin-producing cells had failed as a result.

But for all the reasons we were throwing into the ring about possible causes for Type 1 we all knew deep down that our friends and neighbours who heard that our child had developed diabetes were all presuming that the reason for the condition had been “too much sugar in their diet”. They also thought that diabetes management was simply a case of “not eating any more sugar”. 

This was 25 years ago. My daughter was the only child I knew with diabetes, other than the ones I met on that conference. The kindergarten (and, later, the school) had never seen a case before and the day they had to call the helicopter to deal with her hypoglycaemic collapse practically made the newspapers. It also sorted the men from the boys with teachers drawing lots NOT to go with her in the helicopter.

So where have we got to, in Britain, 25 years on? Not very far, if Matthew Wright’s remarks are any indication.

But the D-community appears to be increasingly well-informed, supported and educated, thanks in part to bloggers like my daughter. They take the time to get alongside each other, to share information and experiences, to encourage each other and support each other during the tough times. And believe me, there ARE tough times. They are also embracing a range of new technologies that help them recover some of the spontaneity and confidence that are often the first casualties of this condition.

What neither the D-community nor Joe-Public needs is the kind of ill-informed, casual, misleading remarks that return us to the dark ages of Edwina Curry and her salmonella-triggering eggs.

I suggest that Matthew Wright sits down to a decent-sized portion of humble pie this Easter and takes the time to issue an apology to a whole community that he has deeply offended.

Friday, 18 April 2014

Open Letter to Matthew Wright

Dear Matthew,

As I fired up my Twitter account this evening because of the conversation flitting around social media about the comments you had made about 'diabetes', I was intrigued about what you could possibly have said to rile a whole community so.

I navigated your Twitter feed and could see that many had not seen the item on today's 'The Wright Stuff, show which had sparked such controversy.  You invited the diabetes 'trolls' (as you referred to them) to go and watch it, so I did.

Which part was it, exactly, that you wanted me to watch before making any ill-informed remarks?  I don't intend to put forward any fallacious points so please, let me be sure we are on the same page. Was it the part where you asked, "Does every little child deserve a tooth-rotting, diabetes-triggering chocolate egg at Easter?".  Or was it the phone-in during which regular insinuations were made that chocolate Easter eggs could, according to your opening link, 'trigger diabetes'. Which ever part it was, I watched it. 

It doesn't surprise me when people ask me if I got diabetes from eating too many sweets as a child, because most of the world is poorly educated on the subject of type 1 diabetes.  It saddens me.  It saddens me immeasurably - but it doesn't surprise me.  Truth be known, I am not someone who usually alights my soap box and gets all together vocal about this issue because I understand completely why they don't: their lives have not been touched - or devastated - by type 1 diabetes.  What do I know about sickle cell anaemia?  Nothing.  What do I know about Leukaemia?  Nothing.  What do I know about multiple sclerosis?  A little, because my life has been touched by it. But then Matthew, I am not the host of a current affairs television programme which invites the viewer to join in and broaden their minds.  Neither are the people who make their badly thought-out and even more poorly delivered comments to me in their attempt to sound interested in something they can see affects my life so greatly.

Perhaps I am not giving you enough credit, Matthew.  Because it seems highly unlikely to me that you find yourself scrolling through hours of peer-supported reviews and up-to-the-minute publications of an afternoon, in order to prepare the auto-cue wording for your daily show.  I find it much more likely that someone on your production team does this.  Sadly, that person has failed to do their job to even the most basic of standards.  Had they searched the Internet for even 10 minutes they would have been able - very clearly, very easily, and with great accuracy - to understand that chocolate does not cause type 1 diabetes.  In fact Matthew, according to the Guardian article you posted on Twitter in an attempt to back up your 'argument', it does not cause type 2 diabetes either: sugar may be linked to Type 2 diabetes, chocolate is not.  And neither is linked to type 1.  

It is a sad indictment of our society that a current affairs show with you at the helm, can make such a foolish, careless and stigma-laden comment. But perhaps the saddest thing of all is that when you were challenged on Twitter and asked to recognise the seriousness of type 1 diabetes, and in doing so think about the way you might feel if it was your own child carrying the wildly-inaccurate but oft-used label, your response was "I can think of worse".  Yes Matthew, I imagine there are worse things than type 1 diabetes.  I imagine holding your dying child in your arms is worse.  I imagine Gerry and Kate McCann would give anything to have Madeleine back, even with diabetes.  But does that in any way diminish the devastation that type one diabetes can have on whole families?  Do you know what that diagnosis really means?  Do you understand the dangers complications and minute-by-minute attempts to manage it?  Do you understand the way a parent feels when their child is labelled as having 'deserved' their type 1 diabetes, because mainstream media continues with such vigour to report this utterly erroneous nonsense?  I doubt it.

And let me tell you this, perhaps the greatest irony of all in your item today; chocolate is good for people with type 1 diabetes. In fact, it is an extremely useful tool in the diabetes arsenal. You see, the fat in chocolate causes a slow, steady and reliable release of the energy within the snack; something diabetes specialists know, and now recommend as a snack for anyone whose blood sugars have a tendency to drop at a certain time of day.

In fact Matthew, having watched the show, seen the tweets and really thought about my response, it is this which I have asked myself the most: why even mention diabetes?  Neither type 1, nor 2, was a discussion point of the item.  Neither one is linked to eating Easter egg chocolate (which has about as much 'sugar' in it as a bowl of fruit and yogurt).  And neither one would have made the piece about Easter eggs and whether or not they should be given to children, any more relevant. 

What it did achieve was to demonstrate that The Wright Stuff is willing to use a medical condition - one fraught with stigma, misrepresentation and which (quite clearly) not enough is known about - as a way of making somewhat mundane links sound sexier.

Sadly, my only experience of your show will be both my first, and last.

Yours faithfully,

Anna Presswell