Connect
Oftentimes in the medical world, we get frustrated that a symptom or problem isn’t discovered or remedied quickly enough to maintain our quality of life. The definition of “quality of life” can be subjective by person, but I think it is safe enough to say it encompasses getting through a normal day without a high level of hinderance from multi-faceted chronic illness(es).
I started my learning journey with Mayo Clinic Jacksonville in the fall of 2018 and became part of the Ehlers-Danlos Syndrome (EDS) Research Program with Dr. Dacre Knight and his team in May 2020. I’ve always believed if you are unable to get answers, if possible, become part of the research in hopes one day there will be an answer, cure, or improved coping mechanisms as they learn with us. I have found that Mayo Clinic has resources to learn more around the different tentacles of our condition(s). This can be a very timely process, so I’ve learned that EDS patients and others with rarer conditions have just as high demand for answers as I do.
Mayo Clinic Florida offers many ways to find answers or just converse with other patients learning to cope. The Patient Portal, for example, allows a point of contact to ask questions, see past discussions, and review appointment findings as well as test results and recommendations until we are able to meet again. Since Covid-19, the teleconference capabilities have increased so it is yet another avenue to take advantage of if there are questions that do not require a physical appearance.
The more we can learn from one another via blogs, portals, chats, advisory committees, and research, the quicker we can capture the nuances of EDS and a plethora of other conditions studied by Mayo Clinic that are intertwined. As patients, let’s try to have patience to move the needle forward on our knowledge, experiments, and trials as we learn with one another, increasing our 2-way communication to have the best experience possible between patients and providers. Keep sharing and caring together!
Author: Tracey Richardson
Ormond Beach, FL, USA
Like
Helpful
Hug
Connect
Great Post Tracey!