OWINGS MILLS, Md. — “It's an invisible illness,” Baltimore County resident Jamie Shepard said. “It's all inside, and so we put on a good front.”
Every six months, Shepard undergoes an eye exam at GBMC's eye center. It’s just one of many appointments that have become part of his routine since being diagnosed with Lupus.
"One of my medications that I take could cause permanent eye damage and once that happens it cannot be reversed," Shepard said. "They do a special battery of tests to see if this medication has started to impact my eyes so that they could pull me off of it if necessary. The hope is that that won't happen because the medication is pretty critical."
Lupus is a chronic autoimmune disease where the immune system attacks healthy tissue and organs. Symptoms can vary widely, but Shepard says the exhaustion can feel like a cancer patient undergoing chemo.
"Our fatigue is like that, but ours lasts our lifetime," Shepard said. "I could barely get from my bed to my sofa to spend the day there."
The joint pain was debilitating.
"I couldn't close my hands anymore. So I would wake up in the middle of the night in so much pain," Shepard said.
But for Shepard, the hardest part was what lupus was taking away from his family. He had a newborn and a new diagnosis at the same time.
"I could barely do anything with him for the first year of his life because I felt so sick," Shepard said. "My fear was, what is this going to do with how I can spend time with him."
He stopped working, walking away from a business he had poured his life into. Any sort of stress triggered flare-ups.
"The doctor said like, hey, you cannot do this anymore. This will kill you if you keep working like this," Shepard said.
There is no cure for lupus, but over time, treatment has helped him regain parts of his life, including time with his son.
"I'm able to show up for events at school, so he always has someone there when he needs them or wants them and so I had to look at it that way. That's kind of what was meant to be for me was so that I could have this time for him. Lupus came into the picture, would I rather have it the other way? Yes, but I have to look at the positive side of what good came out of it," Shepard said.
That shift in perspective drove him to take action.
"I can either sit back and let it happen to me, or I can be more active in figuring out how, what's going on, how can I help?" Shepard said.
Now he raises money for the Lupus Foundation of America, walking in the annual walk in Baltimore.
"I go to Capitol Hill to advocate for research funding and legislation," Shepard said.
He also pushed for Baltimore County to recognize May as Lupus Awareness Month and participates in studies through the National Institutes of Health.
"My main study is a longitudinal study," Shepard said.
Researchers will follow Shepard for the rest of his life. He says the work is already making a difference.
"One of my studies actually changed the protocols for treating lupus patients out of that study that I participated in. So it also feels good that it made a positive impact of getting in and getting poked. Prodded, right? And getting needles," Shepard said.
He hopes the research will provide much-needed answers, especially for men with lupus.
"When I was first diagnosed, there weren't many programs out there for men. What a lot of people don't realize is men with lupus, our symptoms and our issues tend to be a little more extreme," Shepard said.
Only about 10% of lupus patients are male. While men and women often experience the same symptoms, research suggests the disease can be more severe in men. Experts are still trying to determine why.
"The type of lupus I have, it can attack anywhere in my body," Shepard said.
Shepard says he is thankful the disease has not attacked his heart, lungs, or brain — but he has friends for whom it has.
"People that are on kidney transplant waiting lists," Shepard said.
In an illness that can feel invisible and isolating, he says building a community of fellow patients has been invaluable.
"We can talk. Real talk with other patients, we can talk about how we're really feeling because they understand," Shepard said.
