By Marie Y. Lemelle
The coronavirus is unrelenting when it comes to people with underlying health issues. For people who have an autoimmune disease like lupus, a lifelong disorder of the immune system, the challenge to stay healthy can be overwhelming.
People with lupus are more prone to infection and the disease affects many parts of the body causing joint pain and damage to the heart, kidneys and other vital organs. Nine out of 10 people affected with lupus are women. The cause is unknown and there is no cure.
In addition to the standard safety measures mandated by health officials, hand washing, wearing a face covering, social distancing and avoiding touching your eyes, nose and mouth, and disinfecting surfaces, lupus suffers have to avoid triggers that lead to flare ups.
Symptoms of flare ups can be a consistent fever, fatigue, sores in the mouth or nose, painful joints and swelling in the legs. To avoid flare ups, some of those triggers are physical or emotional stress, sunlight and certain drugs, like antibiotics or sulfa drugs.
Some lupus drugs, hydroxychloroquine (Plaquenil) or chloroquine (Aralen), have been used to fight COVID-19. The global interest in using these drugs made it problematic for people with lupus to get a prescription. However, after additional studies, the FDA later revoked the use of these drugs on people who contracted the coronavirus due to concerns about the drug’s serious side effects, safety and unfounded effectiveness.
According to the FDA, the agency is working with companies to ensure the drugs are available for people with lupus. While the drugs can stay in your system for weeks, plan ahead, or contact the FDA if you are having difficulty filling your prescription.
Vibrant Health Chief Technology Officer Neeta Jain, a researcher and scientist, has been leading technology teams to create innovative digital health tools for precision medicine that address the coronavirus, as well as cancer, Alzheimer’s, diabetes, and other diseases. Jain, who also suffers from lupus, talks about living with the autoimmune disease and the risks of contracting COVID-19.
ML: Tell me about your struggle with lupus.
NJ: I began experiencing symptoms many years before I was diagnosed. My doctors couldn’t tie my symptoms to one thing, and the only thing they could offer was to treat me with steroids. On my own, I began searching for answers. I told my doctors my findings, that my symptoms all pointed to lupus, but my doctors still were unsure. When I got the classic symptom of a butterfly rash which appears across the cheeks and bridge of the nose was biopsied. My doctors confirmed I had lupus.
My doctors wanted to give me heavy duty medications, but I did not want to rely on steroids because of the side effects they can have. Instead, I chose to focus on a holistic approach. I practice yoga, meditation and clean eating to stay healthy. While there is no cure, I read many books by others who have had similar challenges and have been successful managing the disease and staying healthy.
ML: When were you diagnosed?
NJ: I was diagnosed around age 40. I knew I needed to take my health into my own hands and manage it so that it would minimally impact my life. At the time, I did not take off any time from work. I was leading a large team of engineers from several different countries, working on a critical project, and I was determined not to let my diagnosis affect my work.
ML: As a researcher, scientist, mother and wife, how do you cope with such as full plate?
NJ: I follow a healthy lifestyle. I take the three pillars of health seriously — diet, sleep and exercise. I always was a vegetarian, but I eventually graduated to a 100% whole foods, plant-based diet. I also avoid stress that can bring on symptoms and I stay away from medications. I am fortunate that my private life has not been affected. My family has always been understanding and supportive.
ML: How has COVID-19 impacted you as a lupus sufferer?
NJ: I have been lucky to have not directly encountered anyone who was positive for COVID-19. I have taken a lot of precautions, and I follow all of the medically recommended guidelines — which everyone should do, regardless of lupus — to avoid exposure, because I understand the disease would hit me harder than most people. When we first learned of the seriousness of COVID-19, right away I informed our teams that that they should work from home.
ML: What have you discovered about COVID-19 that will help those with lupus?
NJ: Thankfully, I have not been exposed to COVID-19. I keep in touch with a lupus support group of about a dozen people, and when there’s any new information about how to protect ourselves we share it. We follow all the standard prevention practices, such as keeping distance from people outside our household.
ML: Tell me about your technology as it relates to COVID-19.
NJ: Vibrent Health built a technology platform for health research that has proved very valuable to COVID-19 research. Our platform was able to create coronavirus surveys, such as the COVID-19 Participant Experience Survey for the National Institutes of Health All of Us Research Program. The research looks at COVID-19 symptoms and the mental health, social and economic impacts of the pandemic.
Under our guidance, we began another project for the National Cancer Institute and National Institute of Biomedical Imaging and Bioengineering to develop next generation contact tracing using Wi-Fi technology that will help differentiate COVID-19 from the common flu and identify outbreaks and advise actions to protect individuals from COVID-19 exposure and to assist society with the return to normalcy.
We worked with the George Mason University and EVMS-Sentara’s Healthcare Analytics and Delivery Science Institute to launch a national study that focuses on how COVID has impacted the lives of individuals and their communities and to find definitive answers about COVID-19.
Marie Y. Lemelle is the founder of www.platinumstarpr.com and a film producer. She can be reached at MarieLemelle@platinumstarpr.com. Follow her on Instagram @platinumstarpr.