Silent sufferer shares her story: Ewodaghe Harrell ’10 speaks out for Lupus Awareness Month

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By Aviva Hope Rutkin

Ewodaghe Harrell is in a hospital bed in Paris. It is barely 5 a.m. The phone call that connects us is unsolicited, intrusive; I had dialed the numbers nervously, afraid of bothering a girl whose focus is, rightly, on other things.

But Harrell is impossibly welcome and warm. “I want people to know,” she says. “I’m motivated more than ever to spread the word.”

Which is: that she has lupus, a chronic autoimmune disease that causes inflammation in different parts of the body. Lupus is a notoriously mysterious disease—there is no single diagnostic test, no definitive symptoms, no cure. Harrell was first diagnosed with it in 2008, after being hospitalized for three weeks in her home state of Florida. Doctors warned her that students with chronic illnesses often have trouble managing at college, but Harrell was undeterred and returned to Union that fall.

An interdepartmental major in Chinese and political science, she was also involved in the Black Student Union, TVUC, Delta Delta Delta, and Golub House. She went abroad three times: to Shanghai, to Washington, D.C., and to Beijing on an independent program. In her senior year, she was nominated for a Watson Fellowship to study racial and ethnic exclusion. “I was trying to take advantage of all the opportunities Union has to offer,” she says. While the lupus caught up with her several times while she was in school, it was ultimately manageable, and she graduated in 2010 with the Rotary Club Endowed Prize for International Study.

After graduation, she decided move in with her boyfriend in France, where she spent time volunteering, teaching, and deciding what to do next.“I was just enjoying my year off,” she said. “I was getting used to the city, I was being monitored by my doctor at home. I always felt fine. There was never an issue with my health.”

On April 4, Harrell turned 23. “I had the most amazing birthday of my life,” she says—not least because she found out she had received a prestigious Princeton in Asia fellowship, sending her to work for the JUMP! Foundation in Beijing for two years. She was slated to start in July. But that night, when Harrell finished Skyping her family, she looked down and realized that the lower half of her body had swollen to three times its size. “That sent shock waves through me and my boyfriend, because we quickly knew that something was wrong,” she says.

They booked an appointment with the doctor for later that week, and he sent her straight to the emergency room. Her kidneys were failing.“I didn’t recognize the severity of it, because I was always told my lupus was mild,” Harrell says. Lupus symptoms vary widely from person to person, sometimes affecting many different systems in the body, sometimes subsiding for years until becoming active again. This is part of what makes the disease so difficult to diagnose.

Doctors scheduled Harrell for dialysis for the following Monday. That morning, right after breakfast, Harrell had a seizure. Doctors sedated her for five days while they tried to assess the situation. She woke up, confused, in a breathing apparatus: “I don’t remember five days of my life.”Harrell has been in the hospital ever since. In addition to kidney problems, she has experienced pneumonia, a stroke, brain lesions, and pericardial effusion.

“I was living a normal life. I had no idea,” Harrell says. “I was very lucky that I ended up going to the hospital when I did.”

She is currently being treated with dialysis, plasma exchange, and a monthly treatment for her lupus. She is also receiving regular physical therapy, as the high blood pressure makes it difficult for her to walk on her own.

“The hopeful, optimistic dream that I dream one day is that, not only will I be at Union in the fall for homecoming, but hopefully by summer they will have my lupus in remission,” says Harrell. This would allow her to receive a kidney transplant, without which she will probably be on dialysis for the rest of her life.

People with lupus are nicknamed ‘silent sufferers,’ but now Harrell wants to bring the disease into the open. In fact, it is currently Lupus Awareness Month, and there has already been a card-signing event and a Delta Delta Delta bake sale.

“I want people to check out the [Lupus Foundation of America] site, do a walk, make it their Facebook status,” says Harrell.

Above all, Harrell stresses how appreciative she is of the support she has received from the Union community throughout her experience.“I do feel stronger and better, and I feel happier every day,” she says. “I’m just feeling so blessed because this is amazing, and that’s what I thought Union was about and what Union means.”

 

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