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NeuroNow - Empowering Pituitary Disease Patients
NeuroNow Winter 2013
Empowering Pituitary Disease Patients
Date: January 1, 2013
Alfredo Quiñones and Roberto Salvatori, along with their colleagues at the Johns Hopkins Pituitary Center, organize an annual Pituitary Education Day to help patients understand their conditions and find support.
When Kandis Cogliano was diagnosed with Cushing’s disease in 2007, she knew nothing about what her condition entailed, other than that she finally had an answer about her constantly bruised skin, hair loss, weight gain, and anxiety and depression. But she also had a lot more questions. “I had never heard of it,” she remembers. “I had so much I wanted to know, like why me? What’s happening to me? What do I need to do next?”
It’s a common scenario for patients with pituitary disorders, says Cogliano’s endocrinologist, Roberto Salvatori.
“It’s not a type of disease that a lot of people talk about,” Salvatori says. “If you have a heart attack, chances are good that you can talk with a relative or friend who’s had the same experience. But since pituitary disorders are relatively rare, people miss that kind of connection.”
Salvatori says that he and his colleague Alfredo Quiñones, a neurosurgeon who frequently operates to remove pituitary tumors, realized that many of their patients had the same disorienting experience after they were diagnosed, while they were going through treatment, and when dealing with the chronic problems that their conditions entail.
“Patients often asked us about support groups,” says Salvatori, “about meeting other patients and getting their questions answered, but there’s just not that much out there.”
To fill this gap, Quiñones says, he and Salvatori organized the first Pituitary Education Day in 2009. Then, and every year since, patients gather to hear physicians talk about different pituitary conditions—what causes them, how they’re diagnosed, and what treatment and living with these conditions entails. In addition, patients give their own perspectives through talks and panels. Afterwards, doctors and patients have lunch together, where they can share experiences and ask questions. The event is free, costing nothing more than a patient’s time.
“We often see patients exchanging email addresses and phone numbers,” Quiñones says. “They themselves can do a much better job supporting each other than we do.”
Last year was the first time that Cogliano attended the event. Besides learning from the physician talks, she says she found it helpful to talk with other patients who also have Cushing’s disease and related conditions. Being years past her own diagnosis, she adds that she was able to give patients just starting on their own journey a sense of what it’s like to make it through treatment.
“Now that I’m sort of on the other side,” she says, “I hope that seeing someone like me can give others some hope that they will get past this, that it’s just a bump in the road.”
Salvatori adds that from what he’s seen at each year’s Pituitary Education Day, patients at all points along the spectrum of conditions and time points benefit from attending. “I think they leave feeling like they’re not alone,” he says. “They feel reassured that there’s a group of people—doctors and nurses, particularly the Pituitary Center coordinator Rita Pach, and other patients—who care about them and their disease.”