Some people choose their career paths for various reasons, such as following in the footsteps of a parent or mentor. Some find that a career chooses them, whether by market forces, geography, or other factors. For many of those who have ongoing health issues, like several of the Citeline staffers you’ll meet below — especially those whose symptoms were initially dismissed — their medical conditions led them to careers in the pharmaceutical industry. And for those already in the industry, their access to information has helped them become advocates for themselves, their loved ones, and others living with chronic conditions. No matter what path led them to Citeline, they now draw from their own healthcare experiences to inform their work on various products and services that encompass clinical planning, regulatory updates, business intelligence, and patient engagement and recruitment.

Seth Rotberg, Partnership Success Manager
Chicago (originally from Natick, MA)
Huntington’s disease

Slurred speech. Poor balance. The doctors were more likely to order a Breathalyzer™ test or a psychiatric consult for Seth’s mother than a battery of medical tests. But neither alcohol abuse nor mental health issues were the root of his mother’s health problems. It would take close to seven years for a proper diagnosis. Seth noted that it typically takes seven to 15 years to diagnose a rare disease.

Seth was 15 when his mother, Debbie, was diagnosed with Huntington’s disease, a progressive brain disorder. Caused by a defective gene, Huntington’s adversely impacts movement, behavior, and cognitive ability over a 10- to 20-year timeline.

Because Huntington’s is a genetic disease, Seth underwent genetic testing at age 20 and discovered he, too, had the gene. What’s frustrating for Seth is that he is ineligible for a clinical trial because he does not yet have any physical symptoms; that is, he is not clinically diagnosed.

“Though as I am speaking, I am slowly losing neuron cells. I don’t want to wait until I’m sick to join a clinical trial,” he said adamantly. “I’m willing to take that risk.” For Seth and others with the Huntington’s gene, however, clinical trials are few and far between. The Citeline Trialtrove database lists only 26 ongoing clinical trials and only 13 in Phase II-III trials.

Seth turned his agitation into activism, starting with a charity basketball event he organized over a decade ago. In 2018, Seth presented a TED Talk at TEDxNatick. He also has joined several nonprofit boards and is a motivational speaker for the international rare disease community. In his speeches, Seth explains what it’s like to be a young person with a rare disease, and also wants to show that it’s OK for men to be vulnerable. “A lot of men don’t share their feelings,” he explained. “Let’s break that bubble.”

Back in July, Seth and another member of the Huntington’s patient community participated in a Federal Drug Administration (FDA) Patient Listening Session. They compiled a patient survey and shared the results so that FDA staff will be more aware of patients’ needs and concerns, as well as their willingness to participate in a clinical trial.

At Citeline, Seth’s goal is to make others aware of clinical trials. “I have skin in the game. I have personal passion,” he said. He works with different clinical trial recruitment partners with the end goal of getting patients into studies and getting one step closer to an effective treatment.

Seth compares clinical trials to a dinner table: “Make sure every stakeholder is included; the patients should be at the head of the table. Without them, there is no study. Get them involved at the beginning and keep them involved throughout the whole process.”

Haley Quinn, Go-to-Market Director
Baltimore
Ehlers-Danlos syndrome, Charcot-Marie-Tooth disease

While many of her first-grade classmates were worried whether the tooth fairy would pay them a visit, 7-year-old Haley was worried that her joints would dislocate yet again. In later grades, without a doctor’s note excusing her from gym class, she was forced to run, even though her knees would dislocate. It would be nearly two decades until she was properly diagnosed, after multiple surgeries on her shoulder, knee, and legs.

Haley lives with a rare disease called Ehlers-Danlos syndrome, a connective tissue disorder. It impacts the structure and function of collagen and connective tissue protein, primarily affecting the joints and muscles as well as the heart and digestive tract. Throughout the years, her heart had to be monitored on a regular basis as she had a tendency to pass out. She also has Charcot-Marie-Tooth disease, a group of inherited disorders that cause nerve damage and can result in smaller, weaker muscles.

Eventually, Haley went to the University of Southern California for pioneering treatment. “I didn’t realize this was a ‘first’ until they asked me to be part of the USC curriculum.” Today, Haley’s health is stable, but it was a long, difficult journey to get to this point.

“Nobody could really tell me what was going on,” she said. Due to her many surgeries, she struggled with her mental health as well, and began her career in the nonprofit mental health space.

Prior to joining Citeline, Haley worked for the online health support platform Mighty. Her initiatives for community engagement helped to build and engage 1M+ member online digital health communities.

“It’s all about the power of telling our stories, the power of technology, of advancements in medicine, of quality of life,” she said. Through her work, she learned about the importance of clinical trials. She wanted to work closer with healthcare companies, developing disease and treatment awareness campaigns alongside patient advocacy groups to reflect the human element. “I wanted to move the needle forward on patient-centricity.”

It all comes together for her at Citeline. “We bring all the stakeholders to the table. As they say, ‘It takes a village,’ especially when it comes to healthcare.”

Nathalie Roth, Marketing Manager, EMEAI
London
Obsessive-compulsive disorder (OCD)

Nathalie speaks frankly about the fact that she was in and out of children’s counseling from the age of 11.

Today, 17 years later, she continues the counseling sessions that have helped her navigate daily life in a complex world. Counseling provided a lifeline for Nathalie during her university years when she lost a friend to suicide as the result of bipolar disorder.

“I wanted to prevent anyone from having to feel that way again,” she recalled. At that point, her condition progressed to OCD. Her guilt morphed into “an intense fear of something terrible happening because I didn’t notice something was wrong.”

Nathalie says OCD is tricky to diagnose, comparing it to what hysteria used to be for women. Their symptoms were dismissed; they were told “It’s not a thing, you’re just overreacting.”

As a result of her experiences, she studied psychology but eventually turned to marketing, into which she infuses a “substantial amount of empathy. I think about how somebody will react to information and what journey makes the most sense for them to understand the product and why they should pay for it, right? That’s what I like about marketing; I enjoy the journey.”

She said her goal is to make the customer feel special. “I want other people’s experiences to be right.”

Nathalie also realized the importance of improving the experience for colleagues with ongoing health challenges. “I saw this opportunity to help organizations help others.” And so, she joined an employee support group, a safe space for people with physical and/or mental chronic conditions. The group provides managers with tools to help them in their roles, especially in cases, for example, where an employee is late for work not because they are sleeping in but because they are too scared to leave the house. The group also focuses on little-talked-about men’s mental health and has trained office mental health first aiders who can respond to someone suffering a mental health emergency or panic attack at work.

In her spare time, Nathalie makes jewelry, which is therapeutic for her, and even has her own Etsy store. “You are creating something, tangible art. It’s something you’re controlling, making things that are beautiful. It’s a distraction.”

Doro Shin, Senior Director of Content Marketing
San Francisco
Lost father to cancer

It has been almost four years since Doro lost her father, but she recalls the painful details as if it were yesterday. His death was sudden and unexpected; while he experienced symptoms for four months, it was only five days from her father’s lymphoma diagnosis until he succumbed to the disease.

Her father, Dong In Shin, had underlying health conditions, including Type 1 diabetes and high cholesterol, so when he initially had flu-like and other symptoms beginning in May 2018, Doro said, “They never connected the dots. Ultimately, I think the system failed us.”

She did note that her father wasn’t the ideal patient: “We always teased my dad about being such a baby. If he said the pain was a seven [out of ten], we’d just subtract two, because he would always exaggerate his level of pain.” But his symptoms progressed, including profuse sweating, difficulty breathing, and weakness so incapacitating that his legs would give out on him, landing him in the ER on several occasions.

Doro traveled between her home in California to her parents’ home in Hawaii so she and her sisters could alternate helping her mother, Monica, with her father’s care. While her mother’s own health condition — an irregular heartbeat — was stabilized, she wasn’t strong enough to provide the physical support her father needed. He was first diagnosed with aspirational pneumonia and underwent physical therapy through the hospital, and eventually at a short-term rehabilitation center, to help improve his strength. “We would be there to support him and sometimes chastise him for not trying hard enough,” Doro said.

Because of fluid buildup in his lungs, her father was readmitted to the hospital and monitored in the ICU. Although scans did not detect anything, her father was not improving so doctors then considered — and confirmed — a cancer diagnosis. At first, the doctors said it was very treatable, Doro recalled, and the next thing she knew, her family was meeting with the palliative care team. Five days after the diagnosis, she flew back to Hawaii “to say goodbye to my father.”

Because Doro has a master’s degree in public health, with a specialization in infectious disease, and volunteer experience at hospitals and clinics, “I could talk the language with the doctors.” For her parents, however, whose first language was Korean, communication was challenging. “When you throw the medical component on top of that, it can get even more confusing,” she said.

Her advice to those advocating for loved ones: “I think the most important thing is to show up, ask the questions, even if it seems obvious. Keep asking the questions.”

Sydney Levine, Marketing Coordinator
Boston
Type 1 diabetes

College freshmen often complain about the “freshman 15,” the extra pounds many students gain once they are on their own for the first time. For Sydney, however, it was the “freshman 30,” and she lost weight, not gained it.

“I was looked at as an 18-year-old girl with an eating disorder,” she said, adding that the doctors didn’t understand her. She was nauseous after eating, thirsty, tired, and contracted a lot of infections.

A track runner, Sydney quit the team. Instead, she was running to the doctor for tests and EKGs twice a week. After being misdiagnosed for 18 months, she finally was diagnosed at age 19 with Type 1 diabetes. It took three hospital visits (“Third time’s a charm”) before she was told, “Your sugar is through the moon.” Her A1C, a three-month average of blood sugar, was 13.6 (normal is under 7). She said the doctors were surprised she hadn’t slipped into a coma.

Upon her diagnosis, Sydney had mixed emotions. She was relieved, happy, and felt validated because she knew she was not imagining her symptoms. She also went through periods of acceptance and understanding. Her diabetes is now maintained with medication, thanks to Boston’s Joslin Diabetes Center, and she uses a constant glucose meter (CGM) to keep tabs on her blood sugar. “It really helps me on a day-to-day basis to live my life.”

Sydney wanted to find peers who had the same level of understanding and comfort around the disease, so she asked the Student Council at Rhode Island’s Bryant University to approve a new club. The club, part of the national College Diabetes Network (Boston University and Boston College also have chapters), was approved. It hosted awareness and fundraising events on campus. Sydney even created a Type 1 diabetes handle for social media: T1dKidSyd.

Prior to her diagnosis, her major was economics. She soon switched to biology. “I was never good at science but ended up doing really well. I was fascinated. I was actually doing better than the kids in pre-med.” She wore a light-blue cord at graduation, reflecting her status as a Type 1 diabetes patient.

At Citeline her interests in economics, biology, and marketing have merged. “I think it’s really important, understanding that you’ll never really know what it’s like to be in someone else’s shoes.”

Carla Holloway, Executive Director, Americas Marketing
Wilmington
Perimenopause, premenstrual dysphoric disorder (PMDD), depression

When Carla started experiencing symptoms at age 40, you could say she was a late bloomer in comparison to her colleagues. However, the fact her perimenopause symptoms began at age 40 actually put her ahead of the curve. And, unlike several of her colleagues whose symptoms were dismissed by medical professionals, it was Carla herself who shrugged them off. In hindsight, she explains that her symptoms coincided with the start of the pandemic, and her grandmother died within the first six weeks of lockdown.

Carla actually suffered from premenstrual dysphoric disorder (PMDD), a much more acute form of premenstrual syndrome (PMS). It is a severe and chronic medical condition. In addition, she began experiencing depression and anxiety.

Because no one was making doctor appointments unless it was serious, she waited until 2021 to seek answers — and treatment. Carla was prescribed an anti-depressant, and the improvement was evident. She remembers thinking, “It’s been a whole week since I’ve not wanted to get out of bed. I feel like Carla!”

Prior to that, Carla says she experienced a level of social anxiety like never before. “I can’t imagine having that, of all people, you know.” Those who know Carla will agree, attesting to her effervescent, upbeat personality. “When I went back to the office for the first time I was like, ‘What is happening with me?’ My heart was racing. I didn’t want to go.”

As a manager, Carla understands the importance of being there for her staff. She notes that when she reported to a woman at work, she had no problem discussing female-related health problems. But with a male superior, she was hesitant to do so, and wonders if it’s an age-related taboo or one that spans generations.

She says her own health issues have impacted her managerial style. “I think that the biggest change is the way that I interact with my team. That is just leading by example and bringing mental health up as a part of our ongoing discussions.” She finds that as she shares more, so have her team members. “It’s very reciprocal.”

Her advice to other managers: “Bring your full self to the table.”

Adding value to the workforce

If you were to run into any of these employees at the water cooler, you’d have no idea of their personal medical struggles. Their contributions to the workforce and to healthcare, not their experiences, are what define them. They are toiling behind the scenes to remove any stigma that may be associated with chronic illness, mental health, or women’s health issues and advocate for patients everywhere.

About Citeline

Citeline, a Norstella company, powers a full suite of complementary business intelligence offerings to meet the evolving needs of health science professionals to accelerate the connection of treatments to patients and patients to treatments. These patient-focused solutions and services deliver and analyze data used to drive clinical, commercial, and regulatory-related decisions and create real-world opportunities for growth.

Our global teams of analysts, journalists, and consultants keep their fingers on the pulse of the pharmaceutical, biomedical, and medtech industries, covering it all with expert insights: key diseases, clinical trials, drug R&D and approvals, market forecasts, and more. For more information on one of the world’s most trusted health science partners, visit Citeline.