Elisa is one of PicnicHealth’s newest Change Champions who is excited to educate the MG community about real-world data research.
Elisa was diagnosed with Myasthenia Gravis when she was 12 years old. Although she was relieved to have received a diagnosis after so many years of weakness, muscle pain, and trouble speaking and chewing, she also had to face a new challenge — grieving the loss of her old life. She realized that a diagnosis did not provide a cure and that there was a new struggle that lay ahead.
Sixteen years later, she is sharing her story on social media and helping bring awareness to MG. “I share my story via posts and stories. My highs and lows, when I have issues with my medical insurance, doctors, what a day in the life of an MG patient getting treatment is like, my symptoms— you name it. I am transparent when it comes to my MG because I was alone and misunderstood for so long. It's important to me that I help others learn to cope with their new/recent diagnosis.” For those who are recently diagnosed, she wants to remind them to “be patient with yourself. It’s okay to grieve over who you were previous to your diagnosis. But do not let it define you.”
PicnicHealth has helped Elisa to become a stronger advocate for herself. “Oftentimes when starting care with a new specialist, they ask for health records dating back to my first diagnosis in 2005. In addition, I find they second guess my diagnosis. PicnicHealth has helped me compile some of these records to better advocate for my health and also made it easier to manage since it’s all in one place.”
Elisa is also excited to spread awareness about research as she has realized there is a lack of “research and education on MG and patients deserve more support and understanding of what’s happening with their bodies. Also in the hopes that this information helps scientists and physicians identify patterns in MG symptoms and treatments to better the lives of patients living with MG.”
We’re excited to have Elisa involved as a Change Champion and help make a difference in the MG community!
Patients typically access their medical records through patient portals, which are online platforms that allow you to view their health information and communicate with your healthcare providers. Many patient portals are part of an electronic health record (EHR) system used by healthcare providers. While EHR systems are helpful tools for managing records from one facility, requesting prescription refills, or paying bills, they often fall short when consolidating information from different healthcare organizations or participating in research.
Clinical trials and PicnicHealth are two approaches when it comes to advancing medical knowledge and improving patient outcomes. While both clinical trials and PicnicHealth have their strengths and limitations, it's important to understand the differences between the two when considering options for improving healthcare.