Not in it Alone: Diabetes Network Founder Finds His Voice
By Meaghan Casey
A nonprofit leader, recognized social media author and passionate diabetes advocate, has lived with Latent Autoimmune Diabetes in Adults (LADA) since 2002.
Sometimes referred to as type 1.5 diabetes, LADA can be classified as a more slowly progressing variation of type 1 diabetes, yet it is often misdiagnosed as type 2.Hernandez was one of those patients incorrectly diagnosed with type 2 and sent home with a treatment of Metformin, diet and exercise. When that treatment proved to be unsuccessful, he was referred to an endocrinologist, tested positive for Glutamic acid decarboxylase (GAD) antibodies – a marker of type 1 – and put on an insulin treatment. He was formally diagnosed with LADA in 2007.
“When you are first diagnosed with diabetes, the amount of information you have to learn is overwhelming,” said Hernandez. “And in the educational materials that people with diabetes typically get presented with, the voice of the patient is frequently missing. When you incorporate the perspective of the patient, the realities of life with diabetes are uncovered.”
To provide others with that personal perspective, Hernandez began blogging about his experience shortly after his diagnosis. In 2007, he founded the social network TuDiabetes.org, and its Spanish sister site EsTuDiabetes.org. The network has more than 26,000 members.
“Nobody with diabetes should ever feel alone,” Hernandez said. “With the proliferation of online communities, you can connect with someone in India, the Philippines or just the other side of town. This facilitates a more open dialogue and a richer exchange, which empowers us and generates a positive impact within ourselves and the community.”
In 2008, Hernandez and his wife, Andreina Davila, cofounded the Diabetes Hands Foundation to further connect, engage and empower people touched by diabetes. He served as the foundation’s chairman between 2008 and 2012, developing the board from five members to 14 and supporting the organization’s growth to nearly $500,000 in annual revenue. As president of the foundation, he is responsible for program strategy, fundraising and partnership development. In addition, he has published books and is a frequent speaker at conferences on the topic of the intersection of social media and health.
Nationally, Novo Nordisk, the world’s leading diabetes care company, has announced a new partnership with the Diabetes Hands Foundation, to ask, “Do You Know Diabetes?” The cornerstone of the partnership is an interactive quiz to test consumers’ knowledge of diabetes facts, risk factors and statistics, and provide valuable education about the disease. You can learn more about diabetes by taking the “Do You Know Diabetes?” quiz today. Visit www.DoYouKnowDiabetes.com or join the conversation on Twitter using the hashtag #DiabetesFYI.
“Living with a chronic condition can make it difficult to relate to other people or allow others to relate to you because your condition doesn’t go away,” said Hernandez. “The ability for people to connect with each other, even at a very basic level, helps them get support.”
Born in Venezuela, Hernandez now lives in Palo Alto, Calif. with his wife and son. He earned his master’s degree from Cornell University and has more than 15 years of experience in team and project management.