Welcome to Feature Friday! One Friday out of each month we will feature someone in the MG community. This includes patients, caregivers, people who work in the MG community, healthcare professionals, and more. Would you like to be featured or know someone who would be interested? Let us know!
This week we are featuring Tanya Renner. Meet Tanya:
What is your name? What is your role in the MG community?
TR: My name is Tanya Renner and I am the Kansas City Program Coordinator for the MGA.
Can you describe your role as program coordinator of KC?
TR: My main role as program coordinator is to support and advocate for MG patients. I also host support groups, distribute resources such as new patient packets, and coordinate the onsite clinics we have in the Kansas City area. You can usually find me at the KU clinic twice a week and then twice a month at St. Luke's, checking in with patients, assisting them with anything MG-related, and working with the neurologists and healthcare team to ensure patients are fully supported.
Prior to working for the MGA, had you heard of myasthenia gravis?
TR: No, myasthenia gravis was completely new to me. Through research, clinic, and working with MG patients, I continue to learn and gain knowledge every day!
Much of your role takes place in the clinic(s). What does a typical day in clinic look like for you (COVID-19 aside)?
TR: The day before clinic I receive a list of patients that will be seen. After catching up with the healthcare team I review the schedule to see how many new patients we have and how many existing patients there are. The nurse will notify me when a patient arrives and has roomed them. I usually try to go and check in with patients before the doctor sees them if time allows, otherwise I wait until their appointments are finished. When I'm not busy visiting with patients, I'm usually working in between appointments such as sending emails and updating our database.
What is the biggest need you see in clinic that patients inquire about?
TR: Patients are always curious as to how this disease is affecting other MG patients. Sometimes they are interested in learning about different medications or wonder if I have seen x or y symptom in other patients I speak with.
What is your favorite aspect(s) of working at the MGA?
TR: I look forward to the tasks and challenges every day associated with the MGA. We have a great team with the same goal in mind. It makes for a positive and encouraging work environment. Knowing what I am doing serves a greater purpose and keeps me going.
How long have you been working at the MGA? In this time, what is something you have learned from myasthenia gravis patients?
TR: I have worked at the MGA since September 2018, so a little over two years. I have learned that MG patients look out for one another and support their community. Patients in the myasthenia gravis community are genuinely interested in helping one another out and truly care about each other.
How has myasthenia gravis (or MG patients) impacted your own life?
TR: My life has been impacted by all the struggles and triumphs I have seen over the two years I have been involved with patients who have MG. I have seen patients accept their diagnosis and not let it define them.
COVID-19 changed 2020. How has the virus changed the way (if applicable) you support patients?
TR: During COVID, I have been the first person many patients have seen in weeks, sometimes months. I have worn many hats. I'm not necessarily just a representative from the MGA but someone who serves as a friend that listens. I enjoy taking the time to have normal conversations with MG patients. Whether it be about gardening, favorite foods, etc., I find these interactions to be valuable for both of us.
What is one thing you are looking forward to in 2021 working for the MGA?
TR: I am definitely looking forward to seeing everyone in person at support groups and MGA events if and when appropriate! It will be nice to make stronger connections and build this community even more.
Is there anything else you want to add?
TR: I want to thank all of the families who allow me to greet them at their visits. I know it is a personal journey and I appreciate them trusting me to go along with them.