2004: I got a severe case of mononucleosis, and never recovered. Instead, developed weird new symptoms.
2005: Doctors performed what felt like a million tests, they couldn’t find any answers. Medical leave from college.
2006-2008: Changed colleges and majors. Received multiple misdiagnoses and tried countless medications, with little success. I lived life on a roller-coaster, pushing myself too hard, spending a long time slowly recovering, promptly taking on too much again. Another medical leave from college, got a part-time job.
2009: Finally received the correct diagnosis of systemic lupus erythematosus! Prescribed a medication to treat the disease itself, rather than just symptoms.
2010: Returned to college at night and worked full-time during the day!
2011: Still living on a roller coaster, ignored my body’s needs for proper rest, nutrition, exercise, and controlling stress. An injury, followed by surgery, reactivated my disease.
2012: Diagnosed with retinal dystrophy, which causes progressive vision loss. My doctor advised against continuing the lupus medication, because it would cause faster, more severe vision loss. Medical leave from work.
2013-2014: Medical leave from school. Searched for doctors that could handle a complicated case. Searched for new medication. Found LFA Heartland Region and educated myself about the disease. Navigated the difficult disability process.
2015-2017: Attended my first in-person event with Heartland Region and signed up as a volunteer. Spoke publicly about living with lupus for the first time!
2018-2019: Started the first (at the time only) FDA-approved medication specifically developed for lupus. My first district advocacy meeting with federal representative was powerful, changing the future for people living with lupus! Finally found a way to use my gifts again with advocating and volunteering.
2020: Received a scholarship to the National Lupus Advocacy Summit in Washington DC. Unfortunately, the Summit became virtual – people with lupus at higher risk with viruses like COVID-19.
2021-2024: Continued to advocate, fighting for changes to Medicare Part D that would change my life. Heartland Region began its Ambassador program and I leapt to join. In May 2024, I received another scholarship to attend the National Lupus Advocacy Summit, this time making it to DC in-person! Joined the 2024 STL Walk Committee to help create a successful event.
Today: Take over twenty different medications, some pills, some injections, some liquid, some topical. At least two medical appointments every week, sometimes 3-5. I never look as sick as I feel and must advocate for myself regularly. Vision loss is more advanced, and I know I made the right decision to stop former medication in 2012. Using a white cane, being visibly disabled, inspires me to fight harder for misunderstood lupus. Every day is a struggle, I maintain a sense of humor about the whole thing. I am lucky to have a supportive mom and friends.
The Future: We will live in a society with greater awareness and understanding of lupus. We will reduce the time to diagnosis, instead of the current average of six years. Instead of three FDA-approved medicines, we will have a variety of safe, effective treatments so that everyone gets the treatment they need as soon as possible. We will understand what causes lupus and find a cure. Someday, with your help, we will End Lupus!
