The next of our 2016 Patient Voices Contest Winners we'd like to introduce is a woman who's not only been living with type 1 diabetes for more than three decades, but is also an esteemed diabetes educator making a difference in the lives of many PWDs (people with diabetes).
Say hello (hola!) to Mariana Gomez, who happens to be our first and only winner from Mexico! She’s one of the 10 engaged PWDs we chose to attend our annual DiabetesMine Innovation Summit in late October in San Francisco this year, raising their voices on innovation and all things diabetes.
You may know Mariana from her Spanish-lanuage blog, Dulcesitos Para Mi (Sweets for Me). And for the past year she's been working with the Diabetes Hands Foundation to bridge gaps with the Hispanic D-Community, as well as helping run the EsTuDiabetes.org community.
As it happens, the American Association of Diabetes Educators (AADE) has just wrapped up its big annual meeting in San Diego, and Mariana was one of the many thousands of educators attending. You can browse the Twitter hashtag #AADE16 to get a glimpse of what happened there, and be sure to watch for our coverage coming soon from 'Mine editor AmyT…
In the meantime, here’s Mariana!
DM) Can you start by telling us your diabetes story, Mariana?
MG) I was diagnosed 31 years ago at the age of 6, a day before my mother's birthday in July. In those days in Mexico, type 1 diabetes was not something you could easily hear about and sadly not all pediatricians knew the warning signs. I am afraid this is something that still happens not only in my country but in many places.
I can hardly remember the days prior to the diagnosis, but my family still tells different stories. We were rushed to the ER believing I had apendicitis as the intense abdominal pain would not go away. Fortunately, that day an Army endocrinologist was visiting the hospital and could tell by looking at me that I was having DKA (diabetic ketoacidosis). I fell into a coma and then woke up being another girl. People tell me I didn’t say much after waking up but I can remember having a bad time trying to figure out why I had to give insulin shots every day now. The rest didn’t really matter, but insulin shots were something I didn’t appreciate so we had a couple of hard months.
Did anyone in your family know anything about type 1 diabetes then?
My father is a scientist and my mother is a teacher, but neither of them had ever heard of type 1 diabetes. There is no one in my family living with type 1 diabetes except me. We had to figure out where and how to learn about it. There were no specialized magazines or journals in México and of course basic tools such as glucose meters or disposable syringes did not exist here either, so we had to work hard to have access to basic supplies back then.
My mother became the best diabetes student and diabetes educator ever. She is still alert and interested in my well-being. I owe her a very intense thank you for my lifestyle. She just loves discipline and that has been quite useful in managing my life condition.
Can you talk a little about your profession as a diabetes healthcare provider?
I should have been an endocrinologist. No kidding, I would have loved the experience, but life took me somewhere else and I am a proud psychologist and diabetes educator. I believe things happen for a reason and that some of us are touched with special conditions and gifts that we can then accept and empower others. I cannot stay still if I see someone struggling with type 1 diabetes. I believe life has granted me second chances and I work hard to help others get the same and better opportunities than mine.
I worked a couple of years for the Mexican Diabetes Federation and other diabetes-related non-profits. I have loved and appreciated all of my work environments. Nowadays I work for the Diabetes Hands Foundation as a Community Assistant.
Do you have a particular focus in your work as an educator?
When I studied my first diabetes diploma back in 2005, I was finishing a Master's degree in Human Resources so I was not considered a health professional. I was given the opportunity to take the diploma evaluation, which I proudly passed but I am not certified yet. I hold a degree in diabetes education and hopefully, now that I have a new Bachelor's degree (in Psychology) I will be able to certify my work soon.
I believe that the emotional well-being of us people with type 1 diabetes is not always considered. Living with diabetes (or any type of diabetes) is stressful and requires teamwork, confidence, empowerment, and other emotional tools which we do not always know how to take advantage of. My professional practice as a psychologist is with children and adolescents with type 1 diabetes. We work on emotions and diabetes is one of our many personal characteristics.
What resources exist or need to improve for people with diabetes in Mexico?
Mexico is a very rich country, culturally and environmentally speaking. I love my country, its surroundings, music and food. I believe that this is a time when people should know their rights (health being the most important, in my opinion) so we can have access to the deserved treatments on time and in form. Diabetes complications are the first cause of death in Mexico yet there is no access to basic tools and treatments. That just does not make any sense. I believe it is a time when we have to work together and have this access granted. Not because of anything else but because IT'S OUR RIGHT.
What do you think needs to be done to improve diabetes education in particular in Mexico?
I see there is a lot of work ahead. I notice that diabetes education is oftenly confused as diabetes sessions or classes. Diabetes education MUST become an ongoing way for us people with different types of diabetes to have the necessary information, data and of course motivation to become leaders of our multidisciplinary team and approach.
Knowing the facts is relatively easy. Putting them into practice, finding enough motivation to begin lifestyle modifications and deal with a 24x7 chronic disease is not that simple. Diabetes education must change; checklists are awesome but do we really walk around managing checklists instead of living? We need more and better interventions. And of course diabetes education should be available for all.
We know you have a blog, but how else are you involved in the Diabetes Online Community (DOC)?
I have been following the DOC for ages, I have learnt so much from people “speaking diabetes” online that I cannot thank you all enough. In Spanish, there is not that much of an online movement yet, but we are working on it. In my daily work at EsTuDiabetes.org I can see people look for information online and recognize that there are not many resources in Spanish. This online information is so helpful for those who cannot afford the best medical attention.
I began blogging many years ago as something for myself. Live journals seemed to be a good emotional tool, at least for me! Nowadays I run a blog and also social media channels where I have the opportunity to meet others. I love my work.
What other diabetes advocacy efforts are you involved with?
I have been involved with different non-profits in the past. I believe no one should experience discrimination, but for obvious reasons I can´t help working with those with diabetes that have gone through discrimination. I believe health and access to treatments is my right and will help other people to have this right granted.
What do you think the state of diabetes tech and innovation?
I am thrilled every time I read about Artificial Pancreas and new tools, but it still shrinks my heart to think these tools will not be accesible for everyone… something has to be done.
We've been asking all our winners to tell us about a time they were a DIY-er (do-it-yourselfer), whether related to diabetes or some other kind of hack they may have created...
Just living with type 1 diabetes in Mexico makes me a MacGyver person.
My husband is a developer, and we have been following for some years now the Nightscout movement and could not help giving it a try. I have hypoglycemia unawareness and we needed to figure out a way to sleep 8 hours in a row without fear. We managed to build our own OpenAPS Artificial Pancreas and sleep hours are better, and more. We are now working on an algorithm that suits my diabetes needs better.
He knows how to develop and I know diabetes, so that could be a good combination right? #WeAreNotWaiting, and we are so thankful for all these developers working on something I could not have imagined before.
Can you tell us about your beautiful family?
I was always told females with type 1 diabetes should NOT get pregnant. It is a worldwide misconception and you can imagine that in some places like Mexico where there's no access to important educational nor technological tools this myth still prevails. I had been preparing myself for a couple of years before getting pregnant when I suddenly did. It was a lot of work. It still is, managing diabetes and taking care of a baby is not an easy thing and no one really talks about it. I’m so in love with my family. My son has become the best company, friend and diabetes educator.
Which advances in diabetes tools have been most important to your quality of life?
I’ve seen different advances in technology in these 31 years with type 1 diabetes, all of them have improved my quality of life, but I still believe diabetes education tools are the best. Having devices but now knowing how to interpret data or not being able to take correct decisions make it hard. DIY tools have been amazingly great for my life and my family´s relief. I am so thankful for all these groups of people creating affordable tools.
Why did you enter the DiabetesMine Patient Voices Contest?
It was hard not to! I read so much about the Summit event, I just had to give it a try! I have lived 31 years with diabetes but can´t seem to learn enough. There is so much I can do to help others and help myself.
What are you most excited about for the Fall event?
Meeting all of the 'Mine scholarship winners. Learning from all of them, to see how things are done in different places and to be a voice for all of us out here.
Muchas gracias, Mariana! We are excited you'll be joining us from Mexico for this year's Innovation Summit.