A Breath Taking Story
Updated: May 23
Lupus Patients Share their Experiences with Pre-Med students at Quinnipiac University
In a small room on Quinnipiac University’s campus, a group of pre-med students and a sea
of Zoom guests got together to listen and engage with a panel of extraordinary Lupus warriors and their life experiences.
The goal of the fireside chat was to not only to raise awareness about the devastating reality of the autoimmune disease, but to also inform these maturing pre-med students of the significant physical and mental challenges Lupus can have on patients and their families.
Education Beyond a Textbook
The conversation was brought together by the You Got This, Kid! Leadership Foundation (YGTK), Lupus Foundation of America (LFA), and Quinnipiac University. Author of YOU GOT THIS, KID! and founder of YGTK Leadership Foundation Chuck Saia led an emotional, yet thought provoking experience that drifted far beyond the basics of Lupus and its consequences. Through the tears of sensitive stories and distressing memories, the group highlighted the value of things often taken for granted.
These values included the significance of physical and mental health, family as it relates to having a strong support system, and the importance of leading a happy and purposeful life. You Got This, Kid! Board Members Amy Szoke and Karin Wagner as well as Lupus advocates Chris Burton and Toni Grimes made up this panel of powerful individuals who were able to share their unique stories and personal experiences with Lupus.
Unfortunately for the Lupus community, it takes an average of six years to diagnose Lupus. The arbitrary symptoms that disguise themselves as independent health complications are sometimes difficult to piece together to pinpoint autoimmune disease. However, the panelists were luckily diagnosed rather quickly, shrinking that six year average down to a few months.
Amy Szoke had found out she had Lupus via a false positive syphilis test while she was pregnant with her first daughter. Toni Grimes, an honorable war veteran, had a quick diagnosis when she was getting ready to deploy for Iraq.
Grimes spoke out about the toll the diagnosis took on her mental health and the importance of surrounding yourself with a support system, “Mental health is a big key because you lose yourself in the diagnosis.”
As Wagner said, “We [Lupus research] have come such a long way in understanding Lupus since my diagnosis.” And although this is true, we still have a long way to go.
Managing Disease Activity
The medications and treatment that are often used to help alleviate the symptoms of Lupus come with their own serious side effects. Almost all the panelists had exposure to treatments such as chemotherapy, corticosteroids, and antimalarials. Szoke said she was currently taking 9 different medications.
Karin Wagner brought up her experience taking corticosteroids because she developed avascular necrosis from treatments. “It’s a difficult balancing act on the medication harming you more than the disease itself.”
Chris Burton recalled his diagnosis when his doctor said, ”This is the best time in human history to have Lupus. It is not a death sentence.” And that statement is very much true thanks to the advancements in research and treatment options.
Even with medication, however, the panelists each have found ways to better cope with the disease. Wagner wakes up two hours earlier than her children, so she is able to combat morning joint pain and help her children get ready for school. Similarly, Szoke tries to remain active during the day to loosen up her body despite challenges of extreme fatigue.
Perseverance and Positivity
Even though the panelists had discussed the obstacles they face on a daily basis, they still beautifully find the light in the darkness. They refuse to let Lupus define them.
The panelists have each found strength and courage in finding a purpose to move forward. Whether that be their family and children, or Grimes’ advocacy work for women veterans and Lupus warriors, they’ve found ways to give back and stay positive.
A New Perspective
At the end of the session, the students were asked to do one thing - share this experience with one other medical student. For these med students, this was more than a seminar about one of many diseases they’ll encounter throughout their schooling. It was a reminder that their patients are not just a compilation of lab results, but they are people with emotions, families, responsibilities and stories of their own.
These med students walked away from the conversation with a new perspective and clarity that every single one of their future patients should be treated with the best empathetic care they can possibly give.
The students will always be tested on science. But maintaining empathetic treatment and understanding the personal impact every diagnosis has on their patients will be the key that separates good doctors from the greats.
About the Program
The fireside chat was one of six sessions about Lupus the students will take part in during Quinnipiac University’s summer pre-matriculation program. The first week they explored leadership lessons from Chuck Saia’s YOU GOT THIS, KID! Words of Advice for Young Leaders book. Check back to hear about the students’ upcoming sessions, or contact us directly for more information.