The mild changes were enough to prompt Vargas, vice president of retail operations at Walgreens, to make an appointment with her primary care provider, who initially thought it was positional vertigo. She instructed Vargas to see a chiropractor, but her vision issues and imbalance worsened into 2021. Allergy testing and a general physical exam didn’t lead to any concrete diagnoses.
She was referred to a neurologist. Her tests suggested that she could have multiple sclerosis, but the results weren’t conclusive. The doctor believed it was migraines and put her on a new medication regimen, despite Vargas’s innate belief that her condition had to be more serious.
Her health continued to decline. In August of 2022, Vargas went on a business trip and couldn’t stand for a long period of time or walk around to explore the city without feeling exhausted. By January 2022, she was frequently falling and losing her ability to walk.
“It felt like someone put lead weights on my legs,” recounts Vargas. “I couldn’t sit up on my own. If I was in bed, I needed someone to help me sit up. I was like a little kid. You had to pile pillows up around me so I wouldn’t fall over. I couldn’t keep food down and I would get nauseous upon eating.”
Her condition got so bad that she went to the emergency room. She was given fluids, but the doctors said they couldn’t diagnose anything—that was up to her primary care provider.
Feeling like a ping pong ball, Vargas made an appointment at her doctor’s office. Her doctor gave her a list of tests to request, with instructions to return to the emergency room without leaving until she had answers. Vargas did so, and 10 days later, she finally had a name for her affliction: sarcoidosis.
Treatment and healing with a clear prognosis
Sarcoidosis is a rare inflammatory disease in which the immune system overreacts, causing clusters of inflamed tissue called “granulomas” to form on different organs of the body. Unchecked, sarcoidosis can lead to fibrosis and irreparable organ damage. Vargas’s sarcoidosis is concentrated on her spine, which led to her mobility issues.
Even rarer is the fact that Vargas has this condition. It’s not common in her family. It’s three times more common in Black people and Black females in particular. It’s often found in people who deal closely with chemicals in their day-to-day life, which couldn’t be more different than Vargas’s corporate job.
“Doctors were asking me what kind of chemicals I handle. I’m like, I’m on conference calls most of the day! But there are plenty of people who are like me who have no idea why we are being impacted,” says Vargas.
There is no cure for sarcoidosis, but as Vargas says, there is “hope for remission.” In some cases, the disease goes away on its own. In others, the disease may not progress clinically, but patients will still suffer from some symptoms that challenge their quality of life. The remaining third of those diagnosed will require long-term treatment. Currently, Vargas takes a weekly drug usually taken for inflammation in cancer patients and receives a specialty infusion drug at the hospital every six weeks. She continues to see her neurologist for testing and has begun to use a walker, but cites improvements in both her vision and ability to walk.
“I go to bed every night asking myself if today was better than yesterday. Nine times out of 10, that is the case. The second question I ask myself is, ‘Can you live? Can you go out in the world and feel like you can accomplish things?’ and the answer is yes. Progress is slow, but it’s happening.”
Finding support from Walgreens
Vargas found support in ways big and small at Walgreens, through her co-workers and the benefits offered to team members. As she navigated health insurance policies, she realized she had access to a health advocate to help navigate doctors’ appointment and costs. Mental health resources through Be Well Connected, like Journey Live, have given Vargas a free method of connecting to experts on topics like managing stress and reducing anxiety during her journey.
Vargas has since joined the disAbility business resource group (BRG), an internal network of fellow team members who identify as having a disability or want to support those who do. Through this BRG, she has shared her experience and learned how to navigate questions with medical professionals from others with rare diseases.
“By hearing others’ experiences, I have learned I am not alone,” she says. “We are surrounded by warriors at Walgreens fighting visible and invisible battles. There is so much strength in this company it is overwhelming.”
Her new friends have lent an extra ear or been cheerleaders when the days get hard. Most importantly, she’s learned that there’s strength in numbers, and her co-workers are more than co-workers.
“I have seen firsthand through people I have met on this journey that it isn’t easy if you don’t have the support of your company and most importantly, the team that supports you, both up the ladder and down,” she says. “Every person is going to need something different as they navigate these waters, whether it be physical accommodations, work schedule accommodations, time off for appointments or a full period of disability, and not every company is equipped to help support that.”
The No. 1 takeaway Vargas has taken from the experience is communication—with your doctors, with your manager and with your support system. The more you vocalize your needs, do your own research and advocate for yourself, the more empowered you will be to come out the other side of a challenging diagnosis.
“Walgreens has been very supportive,” she says. “My leadership has said, ‘Take what you need and do what you need to do. Take time off, go on disability or continue to work and we’ll figure it out.’ My team rallied around me and I was able to stay engaged and take my mind off of my diagnosis. Every time we’re in a meeting, executive leadership refers to it as a family meeting and I truly feel that."