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

DSC03776

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.

arvore de livros

 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.

DSC03806

 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

DSC03753DSC03752

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.

SONY DSC

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.

SONY DSC

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.

break free

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.

DSC03204

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.

DSC03216

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.

cerebro

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.

peter

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.

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).

2013-06-15 10.24.05

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.

2013-06-15 11.23.48

Julia & Alexandra

2013-06-15 11.03.40

Ronaldo

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.

2013-06-15 11.52.39

Here goes more photos of the event:

Brazilian Carnival 2013

DSC08555

I´m here today to talk about the most popular celebration in Brazil held during the Friday to the Tuesday before Ash Wednesday, which marks the beginning of Lent, the forty-day period before Easter. It´s basically when the samba takes the streets of Brazil, and this year I was there too!

This year I participated on the São Paulo Carnival Parade (for the fist time on an official parade, the ones that involves a championship for the best samba school on the avenue in which the costume, music, harmony…) and I´ll share this experience with you showing how to enjoy safely a huge and exhausting Parade.

Believe me, it´s very hard to sing, dance (with a huge and quite heavy costume!), walk and continue smiling, all at the same!!! 😀 That was so funny! One fact is that is not allowed to enter on the avenue carrying anything outside the costume (it  had to be an uniform). That means that we couldn´t stop in the middle of the Avenue to check our glycemia. What did I do? Carried a little purse with glucometer, glucose, money, mobile and documents underneath the costume (near my arms).

So, to avoid any hypo or hyperglycemia:

  1. I started controlling it sooner, with a healthy dinner and little snacks between dinner and the parade (at 3 a.m.)
  2. Checked it before getting into the avenue (right before dancing a LOT of samba!) and
  3. Had  liquid glucose near my hands (underneath the costume). The rest was all about joy and the beating of the drums and I can tell you that it was AWESOME!

And for those who wants to understand a little bit more about the samba, HERE you can see how the carnival drums works. Besides that, there are several major differences between each region. Each one has its own style:

Olinda Carnival:

Olinda

Rio de Janeiro Carnival:

rio

São Paulo Carnival:

saopaulo

Bahia Carnival:

800px-Bloco_da_camisinha_circuito_Campo_Grande_Salvador

Minas Gerais Carnival:

minas

 

Recife Carnival:

frevo

Hoje vou falar sobre a celebração mais popular do Brasil, o Carnaval, festa que antecede a quarta-feira de cinzas que marca o período de 40 dias antes da Páscoa. É basicamente quando o samba vai para as ruas e este ano eu estive lá também!

Acredite, é difícil cantar, dançar (com uma fantasia grande e pesada!), andar e continuar sorrindo, tudo ao mesmo tempo!!! 😀 Foi tão divertido! Um fato é que não é permitido entrar na avenida carregarndo qualquer coisa fora da fantasia (porque todos precisam estar uniformes). Isso significa não podemos parar no meio da avenida para checar a glicemia. O que eu fiz? Carreguei perto dos meus braços e embaixo da fantasia uma pequena bolsa com o meu glicosímetro, glicose, dinheiro, celular e documentos.

Portanto, para não ter hipo ou hiperglicemia na passagem pela avenida:

  1. Eu começei a controlar a glicemia horas antes do desfile, jantei como de constume e fui controlando a glicemia com correções e lanchinhos entre a janta e a hora do desfile (3a.m.)
  2. Chequei a glicemia antes de entrar na avenida (e dançar MUIIITO!!!) e
  3. Deixei glicose (carboidrato de rápida absorção) em um lugar que fosse de fácil e rápido acesso (mas ainda dentro da estrutura da fantasia, próximo ao ombro). O resto foi só aproveitar as batidas da bateria… tudo incrível!!!!

Quer saber mais sobre como é a bateria em um carnaval? Entre AQUI. Além disso, há várias diferenças regionais sobre a celebração desta festa, veja as fotos

Guest Post on Diabetes Mine

A few months ago I was invited to write about “Life with Diabetes in Brazil” on Diabetes Mine Blog. For those who doesn’t know it, Diabetes Mine is one of the biggest diabetes themed blogs in the world. Take a time to explore it, there you’ll find the most different issues related to diabetes.

So, HERE is my Guest Post.

diabetes mine

My visit to APDP in Lisbon

Last week I´ve been in the beautiful city of Lisbon, Portugal.

The sweet friend (and IDF Young Leader  from Portugal) Julia Silveira indicated me to visit the APDP – Associação Protetora dos Diabéticos de Portugal – and get to know the first diabetes association in the world.

Me and Julia at the opening cerimony of the 1st African Diabetes Congress

APDP has 86 years old and a wide range of activities that you can check on their website.

There I met the nurse Lurdes who explained me how the APDP works, it´s history and a little bit about how young people from APDP are getting together to work on the “Núcleo Jovem”  (HERE you can acess their fan page at facebook).

This visit fulfilled me with inspiration and insights. Seems that everytime we learn something new we connect with different knowledges we have in our brain and it makes things (we never imagined it could) emerge.

Besides that it is extremelly inspiring for me to see people in a diferent context (culture) passionate about their beliefs, understand their dreams, see them doing things they love and feeling alive.

That´s what inspires me the most in life, meet people like Lurdes, knowing that there are people making the difference in the world. And this day she made a difference in my world by receiving me, teaching me and inspiring me by seeing her work.

Nurse Lourdes and Me