Turning Pain and Misdiagnoses into Advocacy
Syanne Centeno-Bloom is a woman with intelligence, drive, and disarmingly good looks. At 29, she’s working toward a degree in political science, has contracts with two top modeling agencies and, in her spare time, she’s teaching herself piano.
But getting to this place has been a journey fraught with considerable pain, both physical and emotional. Since her childhood, Syanne has suffered chronic illnesses, misdiagnoses, and unsuccessful treatments.
Physical symptoms dismissed
Born to Puerto Rican parents in the U.S. Virgin Islands, Syanne moved with her family to California when she was 8. In her neighborhood, “I didn’t look like anybody else,” she says. She experienced dizziness and fainting spells and was sick a lot, for no reason apparent to a parade of doctors. The taunting and bullying she endured led to a struggle with anorexia and a stint at a hospital specializing in eating disorders.
“I did a lot of therapy, and I relapsed more than once, but I finally overcame it when I was 19, and I have been fine since,” she says. But Syanne continued to come down with infections—usually strep throat or urinary tract infections.
“I was always told that I was too young to have the pains and problems I was having,” Syanne remembers. After just one visit, one psychologist wrongly diagnosed her with borderline personality disorder. “When you have a history of mental struggle, [doctors] don’t pay attention to physical symptoms,” she says. “It was really traumatic for me.”
At 15, Syanne moved to Maryland (where she met her now-husband, Joseph Bloom, at church) and got involved in pageant competitions. She was named Miss Maryland 2015 as part of the Miss World program, and Miss Intercontinental USA 2018 as part of the Miss Intercontinental program, although she had to resign the latter title because of health issues. The titles helped launch her modeling career and her role as a social media brand influencer. During the pageants, she ran on a platform of mental health advocacy, speaking openly about her earlier struggles with anorexia and even writing a book, Ana: A Memoir of Anorexia Nervosa, about her triumph over the eating disorder.
Still, her pain worsened. Syanne was diagnosed with osteoporosis, and five years ago, after an exploratory laparoscopy, with endometriosis. “That,” she says, “is when everything changed.”
A close call leads to diagnosis
Doctors discovered that the endometriosis had spread to Syanne’s appendix, bladder, bowels, and rectum. They surgically removed the lesions caused by the disease, although endometriosis typically comes back, and they prescribed medication to help manage her symptoms.
But she didn’t get better. Her fever spiked to 104 degrees. She called her doctor, who assumed it was another UTI, prescribed an antibiotic, and told her to take Tylenol. Two days later, the fever hadn’t budged, and Syanne went back to the hospital. “As soon as I got to the ER, they put me in the ICU,” she says. “My white blood count was too high. My potassium level was life-threatening.”
Doctors discovered that Syanne had developed an abscess after the exploratory surgery. After she stabilized, she was discharged.
Back home, Syanne’s condition worsened—again. Her heart rate skyrocketed, prompting more trips to the hospital and more appointments with physicians who had no answers.
“I was very angry at the world, and at the medical field in particular,” she says. “I had gone for help in so many ways, and I wasn’t given the help I needed until I almost died.”
It was the abscess that provided a clue to yet another doctor, who wondered whether Syanne was suffering from an autoimmune disease. She had more tests—and finally, a confirmed diagnosis.
The nausea, gastric distress, and constant infections were symptoms of autoimmune autonomic ganglionopathy, along with Ehlers-Danlos syndrome (EDS) and other immunodeficiencies. “I went my entire life without knowing that I had a genetic illness or an autoimmune condition,” Syanne says. “My immune system was attacking and damaging my nervous system.”
She pondered why it had taken so long to find out what was wrong with her. Was it because she never stayed in one town long enough as a child to have consistent medical care? Was it dismissal because she previously had wrongly been diagnosed with a mental illness, or because of her bout with anorexia, which may have been exacerbated by her constant nausea?
Was it because of her ethnicity? “One doctor told me I didn’t ‘look like’ someone with Ehlers-Danlos syndrome,” she recalls—yet a blonde, white friend of hers had been diagnosed pretty much right away.
“For almost a year, I didn’t know anyone else with EDS who was also BIPOC (Black, Indigenous, person of color), even though I am very involved in the disabled and chronic illness community,” says Syanne. “And with my autoimmune disease, I don’t know anyone at all who is BIPOC with my condition. I know we are out there. Perhaps if we were accurately represented in the community, health disparities and medical bias would lessen.”
Learning to advocate for herself—and others
Today, Syanne spends her days “pretty much within the four walls of my home,” she says, and uses an electric wheelchair most of the time. “It has nothing to do with exhaustion,” she says. “My immune system is attacking and damaging my autonomic nervous system. It means my heart rate skyrockets up to 200 beats per minute, which doesn’t just make someone tired. Having a heart rate that high results in fainting. Lack of blood flow to the brain and organs, over time, can damage vital organs. As a result of constant tachycardia, I can only walk 2 or 3 minutes at a time.”
She studies, works on her social media gigs, and reads. A home health aide helps with cooking and personal care, and a nurse visits to take care of Syanne’s medical port. Her husband has worked from home during the COVID-19 pandemic and “is a huge help,” Syanne shares, although she worries that it will be harder to cope when he eventually returns to the office.
Syanne recently went back to work as a model, and in July 2021 she completed a shoot for a high-fashion magazine in New York. She now knows to pay attention to signals from her body, therefore leading her to rest periodically during the shoot.
When she finishes college, Syanne wants to advocate for people with disabilities—much like she has learned to advocate for herself.
Most recently, it has been her struggle to get her insurers to pay for intravenous immunoglobulin treatments, infusions of blood plasma designed to help restore her antibodies that her doctors say may eventually put her on a path to better health. Without insurance, she explains, the treatments cost upwards of $50,000 per month.
“I have never fought that hard for anything in my life,” she says. “Despite all of the medical documentation, my insurance denied it three times. It took me looking into my own policies and fighting for my treatment to actually get it.”
Syanne had her first monthly treatment in June 2021. “There isn’t a lot of data because not a lot of people are diagnosed every year,” she says. “But at least it is giving me the antibodies I don’t make on my own.”
Meanwhile, she’s focused on what’s next. “My life is definitely more difficult than it was before my conditions surfaced and progressed, but through it all, I have met some pretty amazing people,” she says. “Society cares very little about the disabled, and the health care field often neglects people with chronic conditions and disabilities.
“This is, unfortunately, the hard truth, but it’s something I hope to change one day in politics.”
—Calli Barker Schmidt