We Can and Will Solve the Cruel Mystery

By Dr. Susan Manzi
LFA Board Chair & Acting Medical Director

How can we not already understand this disease that affects an estimated 1.5 million people in the United States? Yet people still say to me, "Lupus, I heard of it, but what is it?

How can that be? How can we have a disease that can kill people, and if it doesn't kill people, it can cause disability and poor quality of life? And still more than 60% of adults say they know next to nothing about lupus.

As a physician that takes care of patients, I am most inspired and most reminded of how cruel this disease is through my patients.

Jessica was a patient of mine that I met when she was 18 years old. She was diagnosed with lupus at age 12, strawberry blond hair, freckled, beautiful, smart young woman. And she had all of the manifestations of lupus: kidney disease, blood clots, joint pain, rashes, fatigue, hair loss, and seizures.

But she was tough, and not just tough physically. She challenged me intellectually and negotiated with me all of the time. I loved that about her.

She was in the hospital for a month for various issues related to her lupus, and she spent most of that time in the critical care unit. At one point, she wanted me to give her a pass to leave the hospital to see a local concert by her favorite singer. I had to carefully explain to her how I was unable to grant her the pass. 

On the day of discharge, she was smiling ear to ear. She was so excited. I asked her what she wanted to do on her first day of freedom. Without hesitation, she said she was going to Olive Garden for stuffed mushrooms. She had been dreaming about them for weeks. It made my heart sing.

Then a few years later, she came to the emergency department, the night before Thanksgiving, with shortness of breath. She negotiated with me then too. She wanted to go home for the holiday. I made her stay.

Sadly, she never made it out of the hospital. On that visit, she was 27, and she had a heart attack and passed away. I remember that as one of the lowest points of my career. How can a young 27-year-old woman die from lupus? It wasn’t right.

These stories only fuel our commitment to improve the lives of those living with lupus through improved patient care and the best research. 

Then I met Curtis. He was a 19-year-old college student studying to be a teacher. He was a basketball player. I have a vivid memory of walking into his room at the hospital. He was very sick, and they didn't know what was wrong with him.

I remember seeing his mother, with one hand on his head, her head leaning close to him, whispering something in his ear. She looked up at me, with tears in her eyes. She said, "Dr. Manzi, please help us."  I was determined to do whatever was needed to make him well.  

Curtis had several hospital stays. He had confusion, headaches, blood clots, and kidney disease, and was on prolonged immunosuppression.

Fortunately, Curtis got better. He's still on immunosuppression and anticoagulation medications, but he finished college. He's now a teacher in a small town in Pennsylvania, and he coaches basketball. He is a husband and father. His is a success story.

These stories only fuel our commitment to improve the lives of those living with lupus through improved patient care and the best research. With everyone’s help and participation, we can do this. We can and will solve the cruel mystery.  It's not if we can, the question is how long will it take?