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.

World Diabetes Congress 2013: standing up to stigma and starting projects anew.

When I heard that my friend Carrie Hetherington, from Tauranga, New Zealand, was heading to the World Diabetes Congress in Melbourne, I acted sharpish to make sure that she would be the first guest-poster to grace the pages of Insulin Independent.  

Carrie was the first ever person from New Zealand to become a young leader and is known not only for her dedicated campaign to change New Zealand policy of providing only one brand of glucose meter for all, she also recently won the World Diabetes Day essay competition about the future of diabetes in Nigeria. 

Making waves?  You bet.

Carrie kindly put into words what this event, and the sometimes heart-wrenching information she learnt there, mean to her.  Enjoy...

It's very hard to put the experience of a life time into words. How do you express what it feels like to spend 10 days with over 140 people from 73 countries who have diabetes? People your own age, people just like you. Testing, injecting, carb counting, listening, supporting one another, being understood in a way that only other people with diabetes can. Before I left I worried about being the first ever young leader from New Zealand, little did I know I was about to walk away with precious friends, unforgettable memories and a lifelong global family.

I was lucky enough to represent New Zealand at the November 2013 International Diabetes Federation Young Leaders Programme and the World Diabetes Congress in Melbourne, Australia. The first 5 days involved sitting through intense seminars from morning till night, working during lunches and dinners and taking short coffee breaks. We immersed ourselves in diabetes. We should have been exhausted, but we were running on adrenaline and enthusiasm, we absolutely loved every second of our sessions.

In the remaining 5 days we attended our own selected seminars at the World Diabetes Congress. People of all statuses attended lectures together and I found myself chatting to CEOs, the heads of major pharmaceutical companies, even global leading diabetes specialists. These situations would never happen for young leaders outside of the conference, we were all blown away that people of such high regards wanted to learn about our upcoming projects and had seen us walk on the stage during the opening ceremony. Being at the World Congress taught us how to advocate diabetes, how to put our condition on the map, effectively support our own countries and then extend that internationally. We were taught to change the world.

We spent days learning about the incredible research happening at a global level - the artificial pancreas, genetic testing and the latest diabetes management technology. We even had the privilege of hearing from Dr Fran Kaufman, who truly believes there will be a cure in our own lifetime because their trials are getting so close to that final step. However, it was the personal anecdotes that really moved us. Friends we had made during the first few days stood in front of the audience and bravely shared their own experiences. The situations they had faced due to their diabetes left us speechless and emotional. In China you have to fight to be able to get an education because some schools and universities will reject your application if you have diabetes; your partner's parents will likely end a relationship or engagement due to a diagnosis; and some leaders had even been fired from their jobs. In India the same stigma is rife, diabetes will seriously hinder your marriage prospects, education and survival. In other countries it is seen as a spiritual curse and medication is ignored or withheld because removal of the 'curse' is the only solution they see as being necessary. The implications seem endless, and are of course shocking to hear when you live in such a liberal country with support, technology and funding from your government.

Diabetes has the potential to destroy your future in some parts of the world. People live in fear and they hide their diabetes because of the serious impact it will have on their life. How can you create support groups and help people with diabetes when they are unable to reveal their condition in public? How can you save lives in developing countries when there is no money to buy insulin? These are the questions that remained in our minds, the things that need to change.

It is confronting to hear about these global issues when you have the same condition. But it made all the young leaders stronger, more focused and more excited about creating projects to make a positive change. You can imagine that most of the young leaders arrived with the intention of learning how to improve the situation in their own country, and most of us left bursting with extra ideas about changing the rest of the world. Our enthusiasm seemed to excitedly snowball during each day of the conference.

The primary goal behind the Young Leaders Programme is for each attendee to return to their country and successfully implement a project in the next two years, before the Vancouver 2015 conference. This project could be anything from a small support group to a camp, or a large global initiative. So keep your eyes and ears open, because 140 young leaders are about to try and confront world issues, remove stigmas and make the world a better place to live in for people with diabetes. The quote we were left with was by Mahatma Gandi, 'be the change you wish to see in the world'. What can you do to change the world? How can you help people with diabetes in your country?

If you are ambitious, excited and between the ages of 18-30. You could be chosen to represent your country at the Vancouver conference in 2015, and I'll be there talking about my projects too. Please have a look at the IDF website when applications open in 2014 http://youngleaders.idf.org/join and talk to your national member association. Before you apply, see what you can do to help in your region. How can you use your positivity to make a difference?

Young Leaders, literally flying the flag