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Young Leaders in Diabetes – Africa!

After Dubai, the Young Leaders in Diabetes got back together in Arusha (Tanzania) for three meetings:

  • Leadership training for young people in Africa
  • IDF Young Leaders in Diabetes Meeting
  • 1º Diabetes Congress of African Region

People in Africa received us with arms wide opened and I feel so blessed that I had the chance to met so many different people, with so many distinct dreams and with so much willpower that touches the core of my motivation.

Together we talked about diabetes challenges in our routines, in our countries, ideas for projects and for the futures.  Besides lots of things they taught me how to play netball (which I need to practice more!) and some dance moves.

They made a special participation on the opening ceremony on the First African Diabetes Congress talking about their necessities to the vice-president of Tanzania. The vice-president promised publicly: “it is our duty to ensure, that no in child will die due to lack of insulin”.  A huge and historical moment for all of us!

I´m really glad to make part of this huge family of people working hard to live in a better world with diabetes, in which diabetes should not prevent anyone from living their lives (and dreams).

I´m so proud of the whole team of young leaders who were there, and the rest of the team who will met in China! Each project fulfills me with passion! And I have to mention the presidency hard work, they have been representing us amazingly!

Once again, all the learning I shared with my colleagues  from the awesome Brazilian project “Células de Transformação” made a huge difference on my perspective of understanding social change, this time in another country. Enhancing the dreams and working hard on the structure, so the charity and assistance can be overcome in the near future, from the collective effort of local citizens

Asanti sana!

***Photos by Pauline Brailly

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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!!!

II IDF Young Leaders in Diabetes Programme

Last November I had the honor to be part of the II Young Leaders in Diabetes Programme that took place in Melbourne, Australia, with more than 130 people from all over the world. Each one making projects that are changing the would you live.

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It´s a multicultural environment that puts together people with the same diagnosis, that pass through similar challenges, but at the end of the day our differences are the part that makes my eyes shine bright.

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I think that every journey we decide to do on the outside announces a big journey on the inside. And I it’s a nice feeling of being surprised by myself and my own development. In those years as an IDF-YLD representative, I’ve learned much more than I can comprehend right now.

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One of the most beautiful thing I can see with my eyes are people connected with their inner energy, with courage to take risks. brave enough to question the “status quo”, and lead by what they can create with the world they receive (not just following every rule and doing what is expected) and all of it with integrity, defending the values each one truly believe.

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Young people together represents what are that generation’s thirst for change. What they CANNOT deal/live with anymore.  Common dream? Live in a better world with diabetes.

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I have a dream to live in a world in which high-income countries don’t explore low-income countries and them give them assistance help (with their money and NGOs) that only let them more dependant and help richest countries to empower their 3rd sector economy (otherwise they would not have jobs for their people).

I have a dream to live in a world that young people don’t leave university so blind to create and do what they believe (not just what they are told to) with integrity of their own self. Thinking that science is answer to everything.

I have a dream that no one have to die or suffer because of lack of access to their rights.

I have a dream that a collective consciousness lead us to a better future than our present. Consuming things (=supporting) that ensure a fair trade with a minimal pollution during all its production and selling.

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World Diabetes Day 2013 – São Paulo

Youngsters organized the “Blue Invasion” to commemorate the World Diabetes Day. To mark the World Diabetes Day, the Blue Power Group, formed by young people with diabetes in the state capital, organized the “Blue Invasion” concentration in the food court of the Bourbon Mall, on the 9th of November, at 20 o’clock, in São Paulo .


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Around 50 people attended the event between people with diabetes, family, friends, health professionals, of all ages. All wore blue color that symbolizes diabetes worldwide (www.idf.org/worlddiabetesday), to arouse the attention of those present and encourage the prevention and treatment of diabetes.

The World Diabetes Day is celebrated annually on the 14th of November, with stocks and prevention campaigns in several countries. According to data from the International Diabetes Federation, the disease affects more than 370 million people worldwide and 50 % are unaware they have the disease. Brazil occupies the 4th place in the ranking with 13.4 million with diabetes, behind of only China, India and the United States.

Type 1 diabetes, usually discovered in childhood, is caused by a failure in the pancreas, the organ that produces the hormone insulin, which regulates blood sugar. Have Type 2 Diabetes, responsible for most of the cases, is directly related to being overweight and sedentary lifestyle, and the good news is that you can prevent it. In both cases, with early diagnosis and proper treatment, the patient can have quality life.

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This same action, the Blue Invasion, is being replied by other group in the ABC region of São Paulo.

 

Diabetes and Cancer: An interview with Antoane Fernandes

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diabetes awareness

Every October the entire world celebrates the Pink October regards to breast cancer prevention. Last year’s post about Pink October was informative and exclusively about breast cancer.  This year, the proposal is to understand a bit more and support people who have type one diabetes and receive a cancer diagnosis.

So I kindly invited Antoane Fernandes to share his life experience with us. Antoane is 26 years old and he lives in São Paulo (Brazil). Since he was young he dreamed to be a great actor, voice actor and singer. But he doesn’t stop there, he also has plans to make a skydiving course. He clearly has a huge thirst for knowledge reflected in his passion to met people, to experience the world and to discover himself continually.

Antoane was 5 years old when his parents got worried about him drinking too much water, constantly urinating and losing too much weight and took him to the hospital. He was diagnosed with type one diabetes. “The most significant (change in my routine) was to avoid eating too many sweets”, he says.

About two years ago, Antoane was feeling an extremely unbearable pain in his right leg. This was the symptom that he later discovered to be a testicular cancer (germ cells), which he says he is almost healed. He explains that all the pain he was suffering was there “(…)”thanks” to the tumor that compressed the veins of the leg and caused a thrombosis”.

Below is our interview. I´m not a journalist. All the questions I did Antoane were based on my curiosity to understand this situation better and thinking about you that read my blog. Being you someone curious about the topic, someone passing (or supporting family or friend) through a similar situation.

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1)      How did you receive the confirmation that you had cancer and how did it change your routine?

I accepted the diagnosis quite well. I didn’t surrender myself at any moment. I’ve always been an optimistic person and very playful. Honestly, the only change in my routine was the “monotony” because I could hardly leave the house and also could not work.

2)      Since I met you, you seemed a very optimistic, cheerful and happy person, making it look like cancer treatment is easy. You looked at the whole process with this positivity from the beginning?

Exactly, I did that since the beginning. I tried to always keep this way to also do not make my friends and relatives worry too much. Now I’m brand new, just can’t say I’m ready for another!

3)      Do you think that the fact that you have had the diagnosis / treatment of diabetes previously helped you cope with the diagnosis / treatment of cancer?

Probably, because the diabetes treatment made me adapt to many “harder” things, in terms of health, not to mention that I got used, since the age of five, with syringes and holes in the fingers every day.

4)      How did you with both treatments, cancer and diabetes?

Dealing with both treatments was easy, since no chemical prevented another and as I use insulin pump it made it smoothly and easier to control my glycemia.

5)      Speaking directly with someone who now goes through cancer treatment and who also have diabetes, what you have to say to this person that would have been important for you to hear back then?

To try to remain as calm and optimistic as possible, be always close to your friends and family and always look for fun in all ways as possible, at least that way I could get away!

6)      What are your plans / dreams for the future?

First, I intend to return to my old job at Livraria Cultura (famous bookstore in São Paulo) as a salesman. Then, in the near future, I plan to become a known actor and voice actor!

book7)      Do you think about create something to help people who are / have gone through what you went through?

I am currently writing a book about everything I went – with diabetes and with cancer – but is not finished yet. I’m doing in a way that is not boring as some biographies that have cancer theme, hope to finish it soon.

8)      Do you have any form of contact where people can get in touch with you?

Yeah, sure! People can find at my facebook profile or by e-mail antenauta@hotmail.com

Thank you very much for your inspiration, your time and all the luck in the world to your projects!!!

For more information about testicular cancer:

American Cancer Society: http://www.cancer.org/cancer/testicularcancer/detailedguide/testicular-cancer-risk-factors

Self-test:

testicular self test

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