I was 18 and a freshman at the college of my dreams, majoring in theatre in Los Angeles when I was diagnosed with a severe case of mononucleosis. I was so ill; I couldn’t finish all my classes. Sophomore year, I determined to make up for lost time and to be myself again, though I suffered from the aftereffects of mono, or so I thought. I had no idea that the Southern California sunshine I loved so much was triggering symptoms. The more I ignored the fatigue and pain, the worse I felt.
As an actress, my body was my tool, and with that tool broken, I couldn’t keep up with my classmates and my professors’ expectations. I felt embarrassed at how difficult it was for me to complete even the simplest tasks like dressing myself or brushing my hair. Equally embarrassing were my new financial problems associated with chronic illness. I saw specialists at the med school who performed what felt like a million tests, but they couldn’t find any answers. I went to the disability center, and they told me that they couldn’t help unless I had a diagnosis, so I took a medical leave as recommended. By junior year, I still didn’t have answers. I was in danger of losing my academic scholarship and my financial aid, and I was heartbroken.
I spent years on what I call “the rollercoaster”. I would push myself way too hard, trying to catch up. Then I would collapse, spend a long time slowly recovering, and promptly take on too much again. Although I enrolled as a full-time student every semester, I thought I might never finish college. I bounced from doctor to doctor, receiving misdiagnoses on the way. I can’t tell you how many medications I tried, with little success.
Finally, 5 years after the onset of symptoms, I got the correct diagnosis of systemic lupus erythematosus and Sjogren’s syndrome. Taking a medicine to treat the disease itself instead of just symptoms was life changing. I worked full-time during the day and was a part-time student at night. I was still on the rollercoaster, keeping up with my bosses’ demands and healthy co-workers. I didn’t take proper care of myself with rest, nutrition, exercise, and controlling stress – all vital for people with lupus. Then I took a routine eye exam and found I had vision loss. The medicine I took wasn’t the cause, but it could make my retinal disease progress faster. I stopped taking it immediately, and I can never take it again. My doctors again recommended medical leave, first from work, then from school.
Now, it’s one crisis after another, preventing consistent treatment. Often a treatment for one problem makes another worse, and the health insurance companies don’t cooperate. It’s a 24/7 job, including resisting pressure from people who don’t understand.
Living with lupus gives me some amazing opportunities. I’m a trained Lupus Advocate and I mentor others living with lupus and raise awareness in my community. I lead meetings with Members of Congress and Congressional staff to secure federal funding for lupus research and participated in two Digital Advocacy Summits. I hope that my family and friends will assist me in giving back to the LFA by donating to my fundraiser!
I’m Walking to End Lupus.
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in Saint Louis to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!