“It Started With My Skin” (A Cushing's Disease Story)

Kaylea Scott, 24, is a songwriter from Brooklyn, New York. When she’s not onstage performing or working on her upcoming EP, she is, like so many other New Yorkers, enjoying a return to normalcy as the pandemic fades. “I’ve been going out to eat, visiting Prospect Park and their free DJ sets, and just taking in everything that the city has to offer,” she says. Kaylea has even more to celebrate than most after the past year — at the outset of the Covid-19 pandemic, she discovered she had a rare pituitary disorder called Cushing’s disease. But thanks to Dr. Rohan Ramakrishna and the team at NewYork-Presbyterian Brooklyn Methodist, she’s back to her music, performing, and everyday life.

“It started with my skin in 2017,” recalls Kaylea. “It started getting discolored and I was getting these really big spots. At first I thought it was an allergic reaction. My dad had something similar, so I thought it was hereditary.” What Kaylea didn’t realize was that these symptoms were markers of Cushing’s disease. “The cause of Cushing’s is a pituitary tumor that produces too much adrenocorticotropic hormone (ACTH), which stimulates excess production of cortisol — the body’s stress hormone,” says Dr. Ramakrishna. “The symptoms Kaylea saw in her skin point towards a hormonal disorder. But that’s just a fraction of what Cushing’s patients can experience.

As time went on, Kaylea noticed more symptoms that started affecting her sleep and overall well-being. “I was up all day, I could only sleep three to four hours a day. I had really terrible anxiety, and I had no idea why,” she recalls. “Most of all, I gained fifty pounds in two and a half years. I didn’t want to perform anymore. And when I did perform, people kept saying things about my weight. And I had the circular moonface that’s common among Cushing’s patients.”

“Kaylea’s symptoms show the role our hormones play in our body,” says Dr. Ramakrishna. “The discoloration, the lack of sleep, the anxiety, the weight gain — all of those stemmed from a tumor in her pituitary gland. When there is too much of something — cortisol, in this case—the body reacts in ways that can can’t be controlled by ordinary means.” Kaylea resolved to do something. “I was going to the gym every day. I was trying so hard to lose the weight but nothing I did was working,” says Kaylea. “And one day, out of pure frustration, I did a Google search. And then I found out there was a disease for it. I saw my primary care doctor in January 2020 and asked if I could get tested for it. They put me in touch with an endocrinologist at NewYork-Presbyterian, and that’s how I met Dr. Ramakrishna.”

Dr. Ramakrishna, who is chief of neurosurgery at NewYork-Presbyterian Brooklyn Methodist, makes it a top priority to keep his patients informed of their treatment options. “When Kaylea was placed in my care, we discussed treatments for this — radiation and surgery.” says Dr. Ramakrishna. “The latter is the most common one. And while Cushing’s itself is a rare disease, it’s something that we specialize in here.”

Although Kaylea was diagnosed in January of 2020, she would have to live with Cushing’s for a bit longer. The Covid-19 pandemic brought the world — and all elective surgeries with it — to a halt. “I wasn’t able to meet with Dr. Ramakrishna until November,” says Kaylea. “At first he said we’d have to wait until 2021, but then he called and said we could do it the next month. I was so excited to get it done with!”

As the surgery date approached in December, Kaylea felt scared. “I’d never had surgery like that before. I don’t usually go to the hospital, and I still couldn’t believe that something was wrong with me,” she recalls. “But what kept me at ease was focusing on the end goal and not on the present. I thought that in the end, I’m going to feel better. This is necessary for the process, the healing process. It was something that I’ve wanted. I told myself, ‘You opted for this. It’s for the better, not for the worse.’”

“When people think of brain surgery, they typically think of us drilling and opening up the skull — which is true in some cases,” says Dr. Ramakrishna. “But we increasingly perform surgeries like Kaylea’s using minimally invasive techniques. We can often take an endoscopic approach through the nasal cavity and to the tumor in the pituitary gland. From there, we extract the tumor and leave Kaylea with a shorter recovery period — and a quicker return to normal.”

“When I came to, the first thing I saw was a bright light. My mom was next to me with a bunch of doctors around. I was so confused! My nose felt heavy; it felt like someone just gave me a new nose or something,” laughs Kaylea.

With the tumor removed, Kaylea resolved to find normalcy again. “When I got home I was sleeping a lot more. I felt like I was catching up on the sleep I’d lost after three years,” she says. “I couldn’t walk up and down the stairs too fast or go on the train. I was really tired and exhausted trying to adjust to getting medication. Going into Manhattan felt like a nightmare. But a couple months later, by springtime, I started feeling like my old self again. I’ve lost all the weight I’ve gained — and it hasn’t even been a year since surgery.”

Now that she’s feeling more like herself, Kaylea is back to performing and writing music. She no longer suffers from the anxiety brought upon by Cushing’s disease. “I’m applying for grants to fund a music video,” Kaylea says excitedly. “And I’m getting ready to release my EP on all the streaming platforms. I sing a lot about my struggles. And I’ve already got Dr. Ramakrishna on board — he likes my songs!” Kaylea went through so much, but for anyone going through the same thing, she has some words of advice. “Always listen to yourself. Listen to your body. If something’s going on, look into it and don’t ignore your feelings.”

Weill Cornell Medicine Brain & Spine Center 525 East 68 Street, Box 99 New York, NY 10065 Phone: 866-426-7787