What she thought would be a regular eye-doctor visit turned into the beginning of a new chapter in her life.
In the fall of 2011, Haddonfield resident Johanna Doran left work with an unexplained pain in her eyes that prompted her to visit a optometrist during her lunch hour. What she thought would be a regular visit turned into the beginning of a new chapter in her life.
“He took one look at my eyes and said, ‘this isn’t what I thought it was, you need to go to Wills Eye emergency room right now,’” she said.
Shortly after arriving at Wills Eye Hospital in Philadelphia, Doran was diagnosed with uveitis, which was thought by the medical staff to have been caused by an underlying condition. Despite negative test results, Doran ended up in the hospital from debilitating headaches, which led doctors to perform a spinal tap that confirmed she had aseptic meningitis; however, her health issues persisted, according to Doran.
As the weeks went on, her ability to hear deteriorated, and she lost 40 percent of her hearing. She resorted to wearing hearing aids.
“I was freaking out,” Doran admitted.
As new cognitive symptoms emerged, she was hospitalized for the second time with a new diagnosis, diverticulitis. Doctors continued to struggle to find which autoimmune disease was the culprit of her ongoing illnesses.
“When I was first sick, all the family saw was me in the house all the time,” Doran said.
With little energy, Doran could not figure out why she was slowly losing the life she had once known, where she was healthy.
In December 2011, Doran confided in her neurologist, Dr. Steve Bromley, that she was not feeling quite right and struggling to think clearly. A contrast MRI would unveil part of the mystery that had been haunting Doran for the past several months — ischemic strokes had caused damage to Doran’s frontal lobe.
“I took the genetic test CADASIL and ruled that out. After many other tests to rule out other autoimmune disorders as being primary, the differential diagnosis came in as Primary CNS Vasculitis, which is even more rare,” Doran said.
Central Nervous System Vasculitis is a rare condition where an inflammation of the blood vessels, arteries, veins or capillaries involving the brain occur, causing a variety of side effects that range in severity, mimicking the symptoms of other debilitating diseases such as Lupus that cause her to get vertigo, migraines and numbness, and is comparable to a feeling of “walking in slow motion.”
“It is a fatal disorder. It is a serious thing,” Doran said.
Doran gets four to six “flare ups” a year where she seeks medical attention and is unable to work, relying on her friends and family to help her perform daily tasks when needed.
“It’s hard because you just rely on a lot of people for everything,” Doran said. “When you have a family member with a chronic illness, it doesn’t just affect them but their entire family, their friends, you lose friends over this.”
Doran’s illness is a silent disorder, and underneath the smiles lies a hidden battle. She advises those with long-term medical disorders to become an “educator, a goodwill ambassador” for the diagnosed disorder.
On Feb. 25, a benefit concert at the First Baptist Church will be held at 4 p.m. to raise awareness for autoimmune disorders, with one of the violinists, Allison Lent, a Kansas City violinist and vasculitis survivor, performing on behalf of her organization “Violin for Vasculitis.” The concert is free and open to the public, but donations are greatly appreciated and all proceeds will benefit vasculitis research and local organizations, including a school music program, tennis and the Haddonfield Japan Exchange.
For any questions or concerns, contact Julia or Carlton Chin at info@playitforgood.com or (646) 338–2446.
Doran encourages community members to attend and show support as well as raise awareness for autoimmune disorders, including vasculitis.
