Happy Holidays from the Blue Mountains of Australia


We spent last weekend, and will spend this weekend, in the Blue Mountains of Australia. Two hours from Sydney, it’s a stunningly beautiful area, graced with a huge variety of shades of blue and green trees and other foliage, thus its name. 

Of course we knew our friend’s property had suffered a terrible fire two months ago; the worst fire on the mountain in 50 years. She saw it unexpectedly roll right over her hilltop and then carry its blaze quickly and decisively. She worked all night tip 2 in the morning, with the volunteer fire brigade and neighbors, to save as many trees as possible, and her home. 

The house is untouched. 15 acres of trees are burnt. As we walk the trail behind her house we see many uprooted, hollow. The community of 200 residents on the mountain, who pitched in in every possible way, are closer than ever. And my friend? She mourns the loss of all the work she had invested planting trees and vegetables, creating an amazing flower garden, and now having to start over. Of course there are economic costs as well.

Luckily, being the stalwart individual she is, she is also able to see a certain beauty in what remains. The charred trees are a panorama in black, grey and orange. Their shapes are quite remarkable. And many are going through a process of photosynthesis; green and red leaves (how perfect for Christmas) are sprouting along their trunks. 

Like the trees’ display of resilience, my friend appreciates the view now open of the mountains around her and she is working with renewed vigor and focus to rebuild and reshape.

Of course I would tell you there’s a message here for living with diabetes; to rouse ourselves to see something beneficial from our new state and have a deeper appreciation for all we have and a renewed commitment to rebuild and reshape our lives. Resilience, the power of nature and very human.

Happy Holidays. I hope you enjoy all the gifts all around you, particularly those that come not tied with ribbons, but with open hands and hearts.

IDF World Congress in Melbourne comes to an end

Screen Shot 2015-02-07 at 11.23.29 AM

The IDF World Congress in Melbourne closes today, and it’s been a delightful five days. 

For me, it began with my address to the “Young Leaders” Friday night – 137 diabetes advocates between the ages of 18 and 30 from 70 countries who are working to increase diabetes awareness, education and healthy living in their country. If you spend an hour in a room with them, you will marvel at how passionate, committed, mature and hopeful they are.

I addressed the Young Leaders as Novo Nordisk’s Keynote speaker and then facilitated a workshop to help them develop their personal stories of living with diabetes and include some of the major findings from Novo’s DAWN2 (Diabetes Attitude, Wishes and Needs) study. Predominantly to live well patients need: 1) Family involvement and support; 2) Education and 3) Fair Treatment.

Being quite honest, in some ways it’s a double-edged sword to come to a diabetes conference. To sit for five days and hear lecture after lecture about the biology, medicine, devices and psychology of diabetes  On the one hand I am lifted by the work being done in the field – and the passionate, caring, genuine experts who are wedded to the cause. I revel in learning what is new, about the advances we’ve made, those around the corner and five and ten years off, and I am among my own. The easy new friendships and conversations that spring up are a rare treasure.

Yet, I am also reminded non-stop of my condition: that no matter how hard I work managing my type 1 diabetes there are no guarantees for a continued healthy future. By its very nature, while we try to control the beast, blood sugar is unpredictable and intense management, while our best card to play, is to some degree a wild card. It was upsetting as well the first few days to learn at this conference that two of my fellow diabetes advocates, even with all their hard work managing their diabetes, each have a new complication. Yet, I have also heard some positive news, that longevity with type 1 diabetes does not necessarily mean you will get complications. In the end, all we can do is our best each  day. 

So what have I learned? That the IDF have two inspiring stewards, President, Sir Michael Hirst, whose own daughter has type 1 diabetes, and new CEO Petra Wilson. That both are committed to the cause and come with many skills, talents and new ideas. 

With Sir Michael’s background in Parliament, he aims to help reform governmental and environmental policy to make healthy choices easier. Wilson’s tech and healthcare background at Cisco will serve her aim to improve the reach and efficiency of healthcare through online technology.

I have also learned that:

• Too many healthcare providers (HCP) still talk in terms of patient “adherence” and “compliance.” 

• The behavioral sessions were too small for the overflowing crowds that couldn’t fit in the room. 

• HCPs think they involve their patients in their treatment while patients largely do not. 

• Diabetes only continues to increase around the world and insulin is still in short supply in third world countries. 

• We have more evidence showing the value of a closed loop system for better blood sugar control and less hypos and so we continue to inch toward having a mechanical “cure,” and that the tools we use today, while a giant leap forward from decades ago, are still enormously primitive, leaving us again only to do our best. 

And so I have come to an awakening. That those of us who have type 1 diabetes, particularly those of us in positions of advocacy and influence, as educators and role models, are, while trying to show the world how we can do anything with type 1 diabetes, unintentionally hiding how much work it takes and how unpredictable it is. 

So I hope to never hide again the fact that my blood sugar is going low before giving a presentation, or that I didn’t properly dose for a meal I had no knowledge had hidden sugar in it, because I have to be a “perfect diabetic.” 

Because when I do hide those things, I am denying the very nature of type 1 diabetes, and inadvertently, denying my fellow patients and the general public, what I want them to know. That the often unreinable blood sugars of type 1 diabetes are often not our fault, and that both exist – I can thank my diabetes for much it has given me and its management takes a great deal of discipline, hope, humor and dedicated effort.

137 “Young Leaders” at IDF’s World Congress in Melbourne

Screen Shot 2015-02-07 at 11.25.37 AM

I’m in Melbourne Australia where Friday night I spoke to 137 young people from 70 countries, largely with type 1 diabetes. They are known as the“Young Leaders” and are part of a program sponsored by the International Diabetes Federation (IDF). 

Tomorrow IDF’s World Congress brings together 10,000 global health care professionals, members of industry, pharma, patients and media who have gathered to hear about the latest advances in diabetes, treatment  and education as diabetes only continues to grow at rapid rates around the globe.

Yet while diabetes seems to run rampant with no end in sight, Friday was an enormously special evening. I was the kick-off speaker for Novo Nordisk, one of the largest pharmaceutical companies, if not the largest, headquartered in Denmark. And it is also an exceptional company. Their mission and values include helping patients manage the psycho social aspect of diabetes.  

From 2011-2013 Novo conducted an impressive study on what patients need emotionally to live healthy lives with diabetes. Top findings were: 1) family involvement and support, 2) Education and 3) Fair treatment. The study, called DAWN2 (Diabetes Attitude, Wishes and Needs) follows an original DAWN study conducted by the company in 2001. 

Throughout the World Congress this week DAWN2 study results will be shared with attendees. But Friday night they were shared exclusively with the Young Leaders.

Following, I had the distinct pleasure to co-facilitate a workshop to help the Young Leaders develop their personal “stories,” and with the major findings from the study, create powerful, persuasive messages for their advocacy.   

As I told the group, our stories of living with diabetes are one of our most powerful tools to elicit change. They are the string that goes out and ties us together, inspires hope and possibility, and moves mountains – which is frankly what we need today and in the coming years to stop this epidemic. 

I am especially gratified to know that these young leaders will be moving mountains when they get back to their home country. And, frankly, that inspires me.