Meet Lucy! She is a long time Medisafer and a recent University of Virgina grad, still based in Virginia. In her last year of college she went from being a member of the marching band and training for a 10K, to experiencing fainting spells for seemingly no reason. Worried that the situation might be a heart condition, Lucy started searching for a solution. Instead of a heart condition Lucy was diagnosed with Ehlers-Danlos syndrome (EDS) and Postural orthostatic tachycardia syndrome (POTS).
EDS is a muscle connectivity disorder and POTS is a condition where too little blood returns to the heart when standing up after lying down. For more info on both, follow the links!
Still in her senior year of school, Lucy was determined to finish her education. No longer able to type due to muscle weakness, she dictated her papers and skyped into classes when she couldn’t walk. To manage the multitude of medications she was now taking, Lucy turned to Medisafe!
One of the common issues Lucy faces in brain fog and forgetfulness. Medisafe helps her stay on track and make sure she’s not just relying on her memory to know if she’s taken her daily dose.
When we asked Lucy what her experience has been managing and coordinating her care, she said it’s both difficult and critical to advocate for yourself. “I have a three ring binder which I basically always take with me,” says Lucy. That binder fills in the blanks left if she’s seeing a new doctor not familiar with her case, or sees a specialist who hasn’t communicated with her other physicians. Showing that she’s keeping up with her meds is just one of the important pieces of info her doctors need.
Lucy’s message to those newly diagnosed: there’s still a choice. “It’s a choice, you can choose to be happy about what is within your power or choose to let it get you down. I’m not saying it doesn’t get hard, but you can choose to roll with it or to allow yourself to be overcome by it,” says Lucy. “Society has a way of telling us that people with chronic illness should just stay home, and that we can’t be productive in the workforce. I disagree.”
“You don’t have to listen to the wider social narrative. I’m just as valuable as those without a disability, if anything it gives me a different perspective.”
Currently, Lucy is an academic tutor and a research assistant. She plans to attend law school in the future, and you can find her on Instagram @lucytrieshmann and learn more about her EDS advocacy. Interested in having Lucy speak at your next engagement? Find her here or contact her at firstname.lastname@example.org.