When Suzi Mellano started her dream job as a video producer for UCLA Athletics in 2019, operating her camera caused excruciating pain.
Like so many other strange symptoms over the years, Mellano figured she knew the cause. Surely her joints ached and her hands swelled because of her cross-country move.
“I thought, ‘I just packed up an entire apartment by myself and loaded a U-Haul truck and moved furniture. It only makes sense to have joint pain, to be sore,’” she said. “But it just never went away.”
Since college, Mellano had explained away other ailments. A rash on her face must be from new makeup. Hair loss, a sign of stress. Migraines ran in her family.
This time, as her symptoms mounted during her first weeks on the job, she happened to work in an office a short walk from a premiere hospital and with colleagues who valued her well-being above all else. With help from Human Resources, Mellano had an expedited visit to a UCLA Health primary care physician, who quickly sent her to a rheumatologist.
Mellano was diagnosed with lupus, a disease where the body’s immune system attacks its own cells and tissues. Lupus can affect joints, tendons, skin, blood vessels and organs.
“Getting that job at UCLA was supposed to happen,” she said. “This aligned so perfectly for me to get the health care that I needed.”
In the less than two years since her diagnosis, Mellano, 28, has become a vocal advocate for educating others and building community by speaking out and helping raise money for research. In May 2020, for Lupus Awareness Month, Mellano tweeted about her medical journey at @SuziMellano. She’s shared her experience on other social media platforms and plans to contribute to a chronic illness website.
“I didn’t really even know what lupus was until I was diagnosed,” she said. “I didn’t know anybody who had lupus. I had no idea what to expect. I do feel like I have the courage to actually stand up and make a difference.”
Warning signs
Mellano, the youngest of four children, grew up in north San Diego County. Her tight-knit family loved sports, whether playing, or attending Padres games.
She applied to UCLA as a senior in high school but didn’t get in to her top choice. Instead, she attended Texas Christian University where she first began to notice rashes on her hands and to experience horrible migraines.
After graduating, she pursued a news broadcasting career before deciding she preferred filming, editing and video post-production.
The year before Mellano started her job at UCLA, she was working in New Jersey and new symptoms emerged. She lost weight and discovered a large bald spot on the side of her head.
“I thought it was stress,” she said. “I didn’t worry too much about it.”
When she developed a rash that caused her eyebrows to fall out, she went back to her dermatologist.
“My eyebrows are my thing,” she said. “I had very big Italian eyebrows. If I have no eyebrows, it’s like what’s going on. It’s not normal.”
Her dermatologist mentioned the possibility of lupus but Mellano dismissed him.
“I thought he was crazy because nobody in my family has anything autoimmune,” she said. “I didn’t think I had lupus because I felt fine.”
New job, new diagnosis
When Mellano decided to begin a job search, she made a cold call to UCLA Athletics about a posting she’d seen months earlier. She landed the job and started in September, right around the time her symptoms progressed again. For the first time, she developed fatigue and chest pain.
By November 2019, she’d been officially diagnosed.
“I was very scared of what I was about to enter into for probably the rest of my life and I knew it was going to change everything,” she said. “I knew that in order to get my lupus under control, I was going to have to slow down a little bit and I’m someone that’s always moving forward. I want to go to work, I want to make videos, I don’t want to worry about some medical diagnosis.”
Mellano started taking daily anti-inflammatory and steroid medication and now undergoes a monthly infusion of a biologic therapy specifically approved for lupus, which costs about $7,000 per dose. The medication is a monoclonal antibody that inhibits a protein that causes the autoimmune response.
“I don’t pay a penny because my insurance is that good,” she said.
She said her mom has dropped everything to offer support, including driving her to infusion appointments even though she isn’t allowed inside because of COVID-19.
As Mellano learned to live with lupus, she also battled guilt over needing to miss work for medical appointments.
“My boss has been so supportive and my co-workers,” she said. “They took me on and a month and a half later I’m like, “Hi, I have a disease and I’m going to be out a lot.’ I felt so bad. I wanted to be able to be what they needed for their department and I was really nervous this was going to hold me back from that.”
In fact, Mellano goes the extra mile, such as staying up until 4 a.m. to produce March Madness videos from the UCLA Men’s Basketball win over Michigan, March 30, advancing to the Final Four of the NCAA Tournament.
The pandemic also gave her more storytelling opportunities as it delayed and disrupted athletic schedules.
“I feel very proud that I’ve been able to deliver through my diagnosis,” said Mellano, who still deals with fatigue and muscle weakness that can make holding a camera, which can weigh from four to 12 pounds, difficult. “We were able to shift focus on content that was important to the student-athletes outside their sports. I was able to help them put together a Black Lives Matter and Women’s History Month series. It gave them the floor to talk about issues that are important to them.”
And now, she said, she considers herself a Bruin for life.
“UCLA was my dream school and I didn’t get accepted and now I work for them and it’s my world,” she said. “It’s been life-changing to be here and to meet the people that I work with and to get help from the most amazing doctors in the world. I feel so grateful.”
Learn more about the work of UCLA Health doctors to treat rheumatic diseases and find out more about lupus.
Courtney Perkes is the author of this article.
