Nobody should die prematurely from diabetes!

On the last two weeks I had really sad news about two women who died because of diabetes. It´s not that uncommon and it always hit me. One was someone close to a friend family, here in São Paulo, a women around 35, who had a successful life in her personal and professional life. What people told me (people are afraid to tell you bad news when they know you have diabetes) that she got a H1N1 influenza for the second time and didn´t resist to it. The other person was a young girl I met in one of my trips, very kind and intelligent. She had a kidney failure and didn´t resist.

One had access to medication and education. I can´t tell that the same happened to the other. But what it makes me think is that handle diabetes is such a difficult task that we need to emphasize the importance of the multidisciplinary treatment, with the idea that no one should face this disease alone or “in the dark”.

This is not new: diabetes is a chronic disease and until this day it has no cure. This is a huge burden people with diabetes have to live with, added to this the stress of controlling 24/7 the glycemia, having to deal with prejudice, fear and stigma, explaining what is happening to you to your family and friends (and sometimes to society) and take care of our body (after all, diabetes is not the only thing you need to care about your health) and mind.

Michelangelo: "I just had to take off what wasn´t Davi"
Michelangelo: “I just had to take off what wasn´t Davi”

When difficult times comes on your professional or personal life it is hard to keep the balance and all the balls juggling in the air. And  I think that fits here some ideas (the same that I need to listen sometimes) that can improve any type of relationship, by the way. It´s not a recipe, but maybe it can give food for thought:

1) Family and Friends: please, listen without any playing the judge or the devil´s advocate. Don´t minimize what someone is feeling by trying to rationalize an emotion.

2)  Healthcare professionals: make treatment decisions a shared goal, that I also have the autonomy to choose the path I want to follow.

3) You there with diabetes:

  • Clarify to yourself why you are feeling what your feeling: Clarity: invest on your self-knowledge, continuously, and in every sense of your being. This will help you understand more of your body (eg.: every time I get to stressed my glycemia tend to raise/ drop) and mind (to help you cope with this condition (and many others that life can bring unexpectedly).
  • You are not alone: don´t be afraid or ashamed to ask for help and search for professional health support, including support groups, sometimes those beloved one around you are not ready to listen, understand and create the empathy you need on a specific moment. Not because they don´t want to, they really love you, but sometimes they just don´t have the tools, we are all humans: liable to defects and limitations;
  • Fight for your rights: of access to medicine, care and education.
  • Don´t be afraid of being wrong: sometimes you’re up, sometimes you’re down. Don´t be too hard on yourself. Learn with your mistakes.

Write this post is somehow a chance to take the pain I feel when those kind of news hit me. Wish and hope that one day no one will die prematurely from diabetes.

Peace.

Addressing T1D at Public Schools, Public Libraries and NGOs

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In 2010 I was gently invited to participate on a beautiful project to create a playful educative book on type 1 diabetes. The Fundação DPaschoal is the social arm of a 63 years old  brazilian organization, DPaschoal.

fundação educarThe Fundação has some projects based on te following dreams:

Trote Cidadania: Through a social technology, develop young able to transform themselves, their schools and communities. Turning violence culture on college into citizenship actions.

“Leia Comigo” (“Read with me”):  That every child in Brazil has the pleasure of reading and his own book.

And this reality comes true, youngsters are protagonists on their own changes at Academia Educar (Education Academy) working society competence and values. Until 2010, more than 31 million books were distributed in all states of Brazil. It´s important to point that Brazil has around 13 million people with all types of diabetes, the same number, 13 million people, don´t how to read or write ( 8.7% of the total population aged 15 years or more) at all.

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 DPaschoal supports a government project called “Todos pela Educação” (“All for education”) and distributes books on public schools, libraries and NGOs. Those book are designed by a committed team of excellent experts on education and are made to be read in groups and generate debates about many important topics/values/moral.

The “Todos Pela Educação” goals are:

 1. EVERY CITIZEN, FROM 4 TO 17 YEARS OLD, IN SCHOOL
2. EVERY CHILD BEING FULLY ALPHABETIZED BY THE AGE OF 8
3. ALL STUDENT LEARNING ARE SUITABLE FOR EACH YEAR
4. ALL  CITIZEN AT THE AGE OF 19 HAVING COMPLETED SCHOOL
5. EXPANDED INVESTMENT IN EDUCATION AND BEST MANAGEMENT PRACTICES

I´m super glad to be part of this project that is so holistic: touching themes such as education in my country, diabetes education, stigma, prejudice at school and myths. A big thank you for my brother, Rafael Labate, that worked actively suggesting type one diabetes as a topic to be addressed by the institution and Fundação DPaschoa  team for allowing me to tell my history, to hear about your history and contribute with my thoughts and networking.

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 So this year, the book,  was released and soon will be available to our population

. It is sponsored by DPASCHOAL, Lei de Incentivo à Cultura and MANN FILTER. If you are interested in sponsoring the project, please contact Marina Carvalho at: marina.carvalho@educardpaschoal.org.br

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Who looks outside, dreams. Who looks inside, awakens!!!

Type 2 Diabetes: Is there someone to blame?

I always admire people who can put in words (simply and easy), thoughts that I can´t express or ideally communicate. In this TED video below, Peter Attia questions the paradigm on the relationship between obesity and type 2 diabetes in a lecture called: “Is the obesity crisis hiding a bigger problem?”

Here is a video I wish every person could watch and reflect about diabetes and judging. But Peter goes so much further by  questioning the conventional wisdom, cause and effect (and which one we’ve been treating?), the order of events between obesity and insulin resistance, conventional stigma that judges/blames people with type 2 diabetes (and its complications) and obesity.

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Click to watch (subtitled in 24 languages): Peter Attia: Is the obesity crisis hiding a bigger problem?

“We can’t keep blaming our overweight and diabetic patients(…). Most of them actually wants to do the right thing but they have to know what that is and it’s got to work.”

*Peter Attia, a surgeon and a self-experimenter. He hopes to ease the diabetes epidemic by challenging what we think we know and improving the scientific rigor in nutrition and obesity research.

Tips for people who don’t have diabetes

Here goes a post for people who do not have diabetes and sometimes don’t know how to deal with friends and familiars who has it.

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You must have listen that a diabetes diagnosis reaches not only the person with diabetes, but the entire family and eventually friends (and environments such as school and work). So, all end up being touched by the diagnosis, more directly or indirectly

Changes in food, exercise, introducing medications and glycemia control 24/7 (24 hours a day, 7 days a week), and there can also be an emotional and psychological burden that comes with a chronic disease. It is really important for a person with diabetes to count on family and friends support.

In 2011, I met the Diabetes Behavioral Institute and they have great materials and programs to help people master the unique challenges of diabetes, conduct behavioral research in diabetes and provide health care providers with the specialty behavioral training necessary for managing diabetes effectively.

Today I’ll present you the Diabetes Etiquette from the Diabetes Behavioral Institute, that you can find HERE in .pdf, its 10 tips for people who don’t have diabetes are:

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At the end of the day, when we are able to laugh at something it gets much more easier. To finish this post I´ll let you with this funny image from a fanpage called Type 1 Diabetes Memes, in which they describe in a funny way people´s perspective on T1D.

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Travelling with diabetes: airport security and diabetes supplies

Dear readers,

When I received my diagnosis, travelling with my diabetes supplies emerged many doubts and questions. 290989_836249642750_89900918_42119293_1221081807_o - CópiaSo many, that back there I doubted if a person with diabetes would be able to travel. Talking with some friends I could see that it was a common concern.

No, this is NOT TRUE! And a great proof that anyone with diabetes around the world can travel are the IDF Young Leaders in Diabetes  meetings (picture on the right was taking on the IDF YLD meeting in Dubai, 2011), that reunites youngsters with diabetes worldwide.

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Many times I receive questions regards to supplies transportation, airport security and tips that I could give.  So, I’ll share with you some new and old interesting tips based on my experience on travelling. It´s important to highlight that nothing written here substitutes a conversation with your doctor or healthcare provider about how and what you should do.

It would be also great to hear from you experiences, situations and tips about travelling as well if you have any question you would like to do, write a comment or send me an e-mail.

1. While planning your trip, it´s important to plan how you will get all the supplies you need to take. Be sure you’ll have the time to buy what you need, considering that is recommended to have with you the double of the amount you would normally use. Accidents can occur (for example, insulin bottles can break or ruin with low or high temperatures) at unexpected times and you may face some difficulties to buy those medications in another country (each one has specific rules to that).

2. While packing your diabetes supplies, it´s strongly recommended that you put all your supplies in your hand luggage (the one that will go with you at the airplane) and not at the baggage you will dispatch. That because lost luggage, luggage exchange between passengers and many other problems can happen.  How to store insulin? The most practical is the Bolsa Frío, in which refrigeration is dismissed, you just have to put it on the water to activate its nano particles and it stays cool for days. Another way is to use a thermal bag.

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3. While passing through airport security, have in mind that each country has its own policies and methods. Besides all your supplies, always have with you a letter from your doctor (it´s interesting to have an english version because it´s one of the most common languages in the world) saying why you need to carry those supplies, explaining your condition. Your diabetes identification to use on your wallet (if possible translated to the language spoken where you are going) saying that you have diabetes (include type) and emergency actions (dog tags are interesting to this purpose too!).  Police officers may ask you what you are carrying (mainly if you wear an insulin pump/ GCM), be gentle to explain what it is, though most of them are trained to deal with it, it is possible that one thing or another they have doubts. It is an opportunity to also be an educator. If you wear electronic devices and don´t know if it can be damage by the scan, get in touch with the organization to be sure.

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4. During the flight, track your blood glucose and do more tests than usual if you feel like you need to. Beware of your feet, stretch every hour (and talk with your doctor about using compression socks). You may need to face jet lag  and adapt your shots to a different time zone, remember to talk about it with your doctor and what would be the best way for you to do it!

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5. Don’t forget your Glucagen – glucagon hormone – and to teach those travelling with you when and how to use it!

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PS: On one of my latest trips, while passing through the airport security with an insulin pump, I experience a new method. First, I took all my personal stuff to pass on the x-ray scanner (here is important to say that if you’re taking water coolers with you it may cause you some trouble because they are liquids and they can be included on the liquids with more than 100ml, those you can’t take inside the airplane), then they make a personal inspection followed by  an exam to identify, they say, if you have been using explosive materials. So they pass a kind of paper toil on your pump and/or hands, insert it on a machine and in a few seconds the result is out and they allow you to pass. In some places, they asked to see my boarding pass and made some notes on a notebook, saying that I was using an insulin pump. Airports normally has their policies on their website, you can search for it. This one, for example, is from the Transportation Security Administration on external devices: http://www.tsa.gov/traveler-information/

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So, check list:

❑Extra supplies (double amount)

❑Diabetes supplies on your hand luggage

❑Doctor´s letter

❑Diabetes ID card

❑Discuss with your doctor how to adjust your medication considering the time zone differences

❑Glucagen

❑Be patient and gentle to deal with questions

❑TAKE A LOT OF PICTURES (EXTRA MEMORY CARDS!) AND HAVE FUN!!!!

Diabetes Education Network for Health Professionals

D-NET! The first international forum to enhance diabetes education and management around the globe. “It is a place for health professionals to connect, find support, share best practices, and discover learning opportunities. D-NET is also designed to enable members to access emerging evidence and diabetes resources”.
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Here are some tips from International Diabetes Federation site about what you can find on D-NET:
  •  Groups: English and Spanish groups are available. Choose your group and join the discussions!
  • Ask an expert: Discussion topics events provided by international experts.
  • Events calendars: Stay up-to-date with upcoming diabetes-related events.
  • Resource Library: See what’s new and what network members think about diabetes education.
  • Videos: See what colleagues are doing around the world.e.g. IDF Centres of Education (Bolivia, Colombia, India, Pakistan, Brazil, Portugal)
  • Members: See who joined D-NET.
  • Did you know?: Current diabetes facts and figures
  • IDF Publications: Quick access to IDF publications
And if you’re attending the World Diabetes Congress in Melboune, be aware of D-NET’s face to face meeting!!!!!!
Access D-NET by cliking on the following link: http://d-net.idf.org/
For more information contact d-net@idf.org

Diabetes Voice – Volume 58

Last week I received the International Diabetes Federation magazine, the Diabetes Voice of June! DSC00373

Among so many excellent topics in this volume, such as breaking barriers to live your dreams with diabetes, reforming the global food system and guidelines for type 2 diabetes, I´ve found two amazing friends reporting their life with diabetes.

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I met Mohammed Hamoud last year in Tanzania (He is the one in red, in both pictures) during the Young Leaders in Diabetes Training in Africa.

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And Maria Hilinger (with a gray t-shirt right in the middle of the picture), I met in the Young Leaders in Diabetes programme, at Dubai, in 2011. Coincidentally I´ve just talked about her on DIABETES WITHOUT BORDERS post.

Would you like to read this Diabetes Voice issue (in English, Spanish or French)? Oh, that´s easy! You can subscribe to receive the printed version HERE or, even easier, read it online RIGHT HERE!

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Ser Jovem Com Diabetes

Dear reader,

You may remember my visit to APDP – Associção Protetora dos Diabéticos de Portugal – on August 2012 when I met nurse Lourdes, you can find this post HERE. Since then, Louders invited me to the Ser Jovem com Diabetes (Being young with diabetes) project from APDP.

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From Brazil, Julyana Messeder, IDF Young Leader Diego Trindade and, from Urugay, Maria Monteiro, also participated on this project, besides awesome Portuguese youngsters with diabetes.

This book is fulfilled with great testimonials on what it means (to each one) to be a young person with diabetes (Ser Jovem com Diabetes). It is distributed to APDP attendants to inspire and show different perspectives of those living with diabetes.

Hopefully it will soon be available on a web version so we can have more access here in Brazil. An awesome material and I´m glad to be part of this project. Thank you friends from Portugal!

Diabetes Without Borders

On June 15th, I did a presentation at  ADJ Diabetes Brasil entitled  “Diabetes Without Borders” which included the participation of Ronaldo Wielseberg (IDF Young Leader  from Brazil), Júlia Silveira (IDF Young Leader  from Portugal) and Alexandra Costa (IDF Young Leader  from Portugal) and Renan Jacomassi (Musician).

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The intention was to show:

  1. Diabetes scenario Worldwide: why diabetes education and prevention is such a big issue;
  2. How young people can make a difference: give audience a glimpse of how simple it can be with a group activity in which they had to help solve a “case”
  3. Those who are already doing: interactivity and activism on diabetes and how IDF Young Leaders in Diabetes have been doing that.

To reach that I started with a  brief presentation exposing my history and what brought me there, emphasizing dreams, purpose and cause (the desire to live in a more just and equal in opportunities to treat and prevent diabetes). Showing undiagnosed and untreated diabetes in numbers and how it impacts one´s health, public spending, prejudice and stigma in our society.

The audience was invited to sit in groups to discuss and come up with suggestions on how to attract young people with diabetes to participate on youth support groups. We had inspired people with many ideas!

Brazil lives, what many calls, a transition moment on its history. A moment that we can dream about our future. Internet connects its vast territory, many emerged from poverty, young people start to make “micro revolutions” on its own community while a bigger change is expected from politicians.

Ronaldo is a living example of how young people with diabetes are already working and making a big impact. He showed the history of diabetes, emphasising on how we have a lot of things today that we can count on to have a good control. Julia and Alexandra from APDP (Associção Protetora dos Diabéticos de Portugal) showed the Núcleo Jovem project , how is diabetes in Portugal and what are their dreams.

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Julia & Alexandra

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We also counted, as you can see in all the pictures, with a mural that compiled projects from the IDF Young Leaders Krystal Boyea, Rachel Lamb, Timothée Froment, Annelieke Overbeeke, Koen Biesemans, Aminath Rahman, Jan Twachtmann, Maria Hillinger, Pauline Vignal and Margot Vanfmural

And in the end, a simple homage to our mentor Mark Barone, who runs the Treinamento para Formação de Jovens Líderes em Diabetes (Young Leaders in Diabetes Training). Thanks to his contribution we are able to make what we do today.

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Here goes more photos of the event:

The start of something new!

Dear friends all over the world,

I´m here this time to try to explain to you the (nonpartisan) manifests happening all over Brazil. Manifests that made Brazilians renew their hopes of contributing and living in a better country.

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“82 years old and I´m not kidding, I´m here to protest”

Since June 6th the population is protesting the rise of  R$ 0,20 (U$0,40) in the bus fare of São Paulo. Someone who lives in São Paulo need to work 14 minutes to afford a bus ticket (from home to work and vice-versa), in Lisbon, less than ten minutes, in Paris, six minutes are sufficient, in Buenos Aires less than two minutes. The monthly expenses with passage commits most of the wages of workers and we still have an inefficient and chaotic transportation system.

It´s true that protests against rises often happens from time to time everywhere. So, why this one is getting such a big picture? 

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Manifest on Paulista Avenue

Briefly, the movement to contain the fare rise collided with an increasing  “feeling” among young people, adolescents, adults and elderly Brazilians: a common dissatisfaction with the adverse social, political and economic developments of the country while we were expected to have an incredible growth we didn´t, and worst, inflation and interest rose. Part of this scenario consists:

  • Politicians, in all levels, are caught in corrupt acts and don´t pay for their crime. The Senate´s President, called Renan Calheiros, for example, is accused of corruption, peculation, fraudulent misrepresentation and falsification of document and it didn´t stop him to be the president of the Senate.
  • Government spending on public affairs are (almost ever) overpriced, and nothing is done to punish that. World Cup budget is already bigger than what´s planned to cost.
  • Citizens pay A LOT of taxes and we don´t see it reinvested in health, security and education. According to IBTP statistics, Brazilians work 5 months of the year just for the government (to pay taxes!).
  • Public schools are increasingly scrapped and teacher earning very little!
  • Violence in Brazil kills more than war. The number of murders in Brazil between 2004 and 2007 is higher than the low of the 12 major armed conflicts in the same period, 192.804 people were killed by gunfire in Brazil while wars have killed 169.574 people.

What started in São Paulo reached many parts of the country and beyond against fare rises, corruption, dissatisfaction on health, education and security. For example, THIS VIDEO shows protesters on our National Congress in Brazil´s capital, Brasília, and the image below show protests around the world.

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Protests outside Brazil

Perhaps, it´s just the beginning of an incredible movement all Brazilians deserve and desire. A country with more justice, equality and quality of life in addition to an amazing culture, people and geography. If all this protests will continue? I don´t know, but it´s incredible how it is spreading all over Brazil rapidly. One thing I´m quite sure, the people are more aware of its power to make changes and that´s a huge start because policymakers are aware of that too!

Photos I took from the streets

Any doubts? Curiosity? Leave a comment.

#vemprarua #changebrazil