Betsy Rodriguez: Giving a Voice to those Who Live with Chronic Conditions Nutrition & Physical Activity 01/12/2022 • Editorial team Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) A special project celebrating the fifth anniversary of “Our Views, Our Voices” | Learn more Dr. Hedwig Borges as he goes through his journey with cutaneous T-cell lymphoma. For many years, Betsy Rodriguez was terrified that she could lose her daughter Carmen to hypoglycemia at any moment. As a girl, Carmen was diagnosed as having type 1 diabetes. “I cannot count the hours I’ve spent dealing with insurance companies and third-party vendor pharmacies for my daughter to receive a life-saving continuous glucose monitor and an insulin pump,” Betsy writes in the NCD Diaries project, an initiative launched by the NCD Alliance. “Now that she has these, my fear of losing her to hypoglycemia has settled!” Diabetes is one of the most common forms of NCDs – short for noncommunicable diseases, which are diseases that are not transmissible from person to person. Continuous glucose monitor (CGM) and continuous subcutaneous insulin infusion (CSII). NCDs are the first cause of death and disability worldwide, accounting for 74% of all deaths and more than three out of four years lived with a disability. They also include cancers, cardiovascular disease, stroke, chronic respiratory diseases, mental health and neurological conditions, amongst many others. The NCD Diaries are a participatory, community-based and multimedia storytelling project that illustrates and highlights individual lived experiences and calls for action on NCDs. Because of Carmen’s condition, Betsy had always been aware of the challenges of taking care of a person with a chronic disease. However, this did not prepare her for the moment her husband Hedwig, also known as Papa Bear, was diagnosed with cancer five years ago. “Hearing the word ‘cancer’ in a diagnosis is terrifying enough, but here’s another scary thought: the treatment method is likely to be dictated by your insurance coverage,” she wrote. “It was devastating to see the love of my life and husband of 46 years go through his journey with Cutaneous T-cell lymphoma – a rare cancer.” Hedwig and his whole family were heavily affected by the disease and the treatments he had to undergo. “His appearance, vitality and productivity altered, so I became the caregiver and only source of income,” Brenda says. “Catastrophic conditions like these demand high out-of-pocket payments. Sometimes, I feel like a deflated balloon!” For her, taking part in the NCD Diaries was very important. “I want to give a voice to those that live with chronic conditions that do not have a voice, especially those from marginalized communities living and experiencing health disparities and inequities,” Brenda emphasizes. “I want to help put a face to diabetes and other chronic conditions.” Read Betsy Rodriguez’s full NCD Diary. Read previous post. Image Credits: Courtesy of NCD Alliance. Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Combat the infodemic in health information and support health policy reporting from the global South. Our growing network of journalists in Africa, Asia, Geneva and New York connect the dots between regional realities and the big global debates, with evidence-based, open access news and analysis. To make a personal or organisational contribution click here on PayPal.