As a single mother of three young daughters diagnosed with sickle cell disease, Mapillar’s life is busier than most. In addition to helping with homework, attending after-school activities and scheduling play dates, Mapillar also has to make time for regular doctor’s visits and organizing records for doctors and medical insurance.
At first, Mapillar says, navigating life as a single parent of children with sickle cell was lonely. It often felt like there was no one to turn to for support or resources. Inspired by her daughters and hoping to be a resource for others, Mapillar started MTS Sickle Cell Foundation to “increase the public’s awareness of sickle cell anemia” as well as to provide support to families affected by the disease.
“I decided to be that change I wanted to see,” said Mapillar, “I’m doing for other families what I wish others had done for me—helping families pay their rent, food, expenses. We offer support in the US but we also have international reach. Our community on Facebook builds morale and features sickle cell warriors for people around the world.”
More recently, Mapillar made another life-altering change: she signed up for PicnicHealth. She was immediately impressed by how easy the platform was to use and how many of her challenges it addressed. The most important for a busy mom like her is the time and effort she saves.
“As a caregiver, I can organize my profile so all my children’s records are stored under one account,” she said. “For me, right now, even that little bit is huge. I don’t have to log in and out of different accounts. That’s wonderful.”
She also noted what a relief it is to know that she can keep her daughters’ medical timelines organized into adulthood. Previously, any platforms she used would expire once her children left pediatrics.
Beyond the technical details, though, Mapillar said that what makes PicnicHealth stand out the most is their dedication to their customers. She finds that especially impactful as someone whose life is impacted by chronic illness.
“Our issue is that nobody cares or is paying attention to us,” she said, “PicnicHealth says ‘we get it.’ They are very receptive to ideas for improvement. As a company, their approach is to ask if they can have a seat at YOUR table.”
Finally, Mapillar is excited about PicnicHealth’s partnerships that provide user data to support research and clinical trials. As someone who is used to advocating for her community of sickle cell warriors, she appreciates the need for data to support new initiatives and treatments.
“We’re in a data-driven world,” she said, “PicnicHealth goes to the root of that issue.”
