By Dai Já Norman, Capital News Service
RICHMOND – Pictures of family members and friends and a British flag cover the walls of her dorm room at Virginia Commonwealth University. Anatomy textbooks, note cards and a Himalayan pink salt crystal lamp occupy her desk.
On Majesta-Doré Legnini’s nightstand is an assortment of prescription and over-the-counter pill bottles. She takes six pills every evening and one in the morning, along with three vitamin supplements. “I am in pain every second of my life,” the 19-year-old sophomore says.
Legnini describes the feeling this way:
“Imagine your legs are stuck between a bed frame and a box spring. And they are under the box spring, and then there’s a mattress, and then there’s an anvil, and then there’s a 500-pound-man sitting on top of the anvil playing a grand piano. That’s what it feels like.”
Legnini was recently diagnosed with Ehlers Danlos syndrome, a rare disorder that afflicts connective tissues and joints. But she has been fighting through the pain as an honors student, a double major (health science and political science) and a community volunteer, working with homeless and mentally ill people.
Although EDS tries to slow her down, Legnini (pronounced lay-NEE-nee) lives a fast-paced life.
On campus, she is a member of the VCU Honors College and VCU Globe, a living and learning program that focuses on global education and international experiences. She helps arrange campus tours for the Undergraduate Admissions Office and leads Their Home RVA, a website and student organization dedicated to improving community relations – especially between VCU students and the homeless population.
Off campus, Legnini is an intern at the Daily Planet, which provides health care and other services to homeless individuals and other people in need. She also is a writer for The Mighty, a website for people with disabilities, diseases, mental illness and other challenges to share their stories.
Susan Sereke, advancement coordinator for the Daily Planet, said Legnini is a testimony to the power of passion.
Legnini is driven by “her passion about the issues of health care and homelessness, and a desire to improve the lives of others,” Sereke said.
About Ehlers Danlos syndrome
EDS is genetic. Symptoms can range from mildly loose joints and hyperelastic skin to debilitating musculoskeletal pain and aortic dissection, a life-threatening heart condition. At least one in 5,000 people have some form of the illness, according to the Ehlers Danlos Society, a support group.
Legnini says she has been wracked by pain from her earliest memories. As a child, she remembers crying when she went on long walks. She was always prone to injuries when playing sports.
Growing up, she sought medical attention numerous times, but doctors dismissed her complaints, attributing them to growing pains. Last May, Legnini’s condition worsened, and she decided to try her luck again by seeing another physician.
“Pain became more frequent,” Legnini recalled. “I felt weaker. I was getting exhausted by seemingly simple activities. It started to become difficult to concentrate, and most importantly PAIN, PAIN, PAIN. It got more intense, more frequent, and made my life much more difficult.”
After almost a year of doctor visits and road trips between Richmond and Manassas, a rheumatologist diagnosed Legnini as having EDS. Legnini was already familiar with the illness: Her best friend also has a form of EDS.
In fact, during high school, Legnini did a lot of research about the disease and even helped raise money for theEDS research center in Maryland. While researching the disease, Legnini thought she might have the symptoms but then rejected that notion as a projection of her friend’s situation.
Many people, even physicians, are unfamiliar with EDS. So Legnini brings a binder explaining the illness whenever she goes to see a doctor.
There is no cure for EDS; however, patients can take medication to reduce their pain and lower their blood pressure. (High blood pressure is associated with the disease.)
Living with pain: ‘I see outside of my illness’
Because of the constant pain, Legnini often must gauge whether she is well enough to leave her bedroom. When the answer is no, she stays in her dorm and tries to get as much homework done as she can.
Walking, cooking and writing are things that many people take for granted. But for EDS patients, these tasks are not effortless. However, Legnini has found ways to overcome adversity.
She is enrolled in some online classes. Also, her older brother, Luciano Legnini, lives across the hall in VCU Globe and can assist her with everyday tasks, such as lifting heavy objects, grabbing items from a high shelf, cooking and cutting up food.
“She doesn’t want to portray herself as like this dependent,” Luciano Legnini said. “But I am here to help, and I am always willing to help her.”
Majesta-Doré Legnini begins each day with an elaborate morning routine. It starts with her cracking every joint in her body – a laborious process that alleviates some of the pain.
“I crack my back first, and then I move my knees and ankles so that they crack a little bit,” Legnini said. “I crack my toes, and then my hands just crack constantly.”
Then she stretches for 10 minutes, showers and wraps her knees, ankles, and shoulders in KT tape – a tape used for muscle, ligament and tendon pain relief and support. She gets dressed and grabs breakfast that meets her diet restrictions – gluten free, sugar free and dairy free – before heading out.
Legnini says it would be easy to play the victim and wallow in self-pity. She refuses to do so.
“I am not able to do some things,” she said. “And I know those things, and I don’t do those things. But I am able to learn.”
Legnini plans to get a joint degree between VCU and the University of Richmond with a master’s in health administration and a specialty in civil rights law. After college, she intends to advocate for inclusive and accessible health care.
Her goal is to ensure that people from all walks of life have access to the health care system. She won’t let her own disease define her.
“I see outside of my illness,” Legnini said. “But my illness is inside of everything I do. And so, the world is larger than my illness, but my illness is not larger than my world.”