It's a nightmare to have to struggle to access the medicines, supplies and technology that are a lifeline for my daughter.
Did the diagnosis come as a surprise and how did it affect you?
I remember my daughter's diagnosis well. Carmen had always been an active and healthy child, running and playing like other children. She started getting very thirsty, losing weight and feeling unwell. One day, I was surprised to find ants in her underpants. I immediately thought of diabetes and called her pediatrician. He said I was making something out of nothing but, for my peace of mind, told me to bring Carmen to see him. When he saw her and I explained her symptoms, he ordered a glucose test. One hour after the test was conducted, he called me and told me to go to the emergency room immediately. She was directly admitted to the intensive care unit with diabetic ketoacidosis. Her blood glucose was over 700mg/dl.
I reacted with surprise and disbelief when I was told my daughter had type 1 diabetes. My husband and I spent the entire night asking ourselves why this was happening to our family. Thankfully, the doctor who treated Carmen was friendly, compassionate and knowledgeable about diabetes. The news was devastating, but I told myself I needed to do something to help my daughter. We incorporated diabetes into our daily life and I became a certified diabetes educator.
Have you ever faced issues supporting your child with diabetes?
Despite Carmen having access to everything she needed to manage her diabetes – insulin, insulin pump, technology, education, diabetes camps – she didn't accept her condition. Her teenage years were a roller coaster of depression, eating disorders and bouts of low and high blood glucose. After years of struggle, she finally accepted her condition and things started to get better. She became a mentor for other people living with the condition and is now a happy adult and mother to two beautiful daughters.
It was challenging when Carmen reached the age where she was no longer covered by my health insurance. Finding an affordable health insurance plan with a pre-existing condition like diabetes can be difficult in my country. We found one but the co-payments are very high and securing coverage for the high costs is a constant challenge. It's a nightmare to have to struggle to access the medicines, supplies and technology that are a lifeline for her.
If you could change something about diabetes care, what would that be?
My dream is that the next century will bring equality for people affected by diabetes, in terms of access to insulin, supplies, diabetes-related technology, education and quality care. This would make a difference in the health outcomes of every person living with diabetes.
