This post is part of a three-part conversation series with Dr. Sheri Prentiss, founder and president of the LIVE Today Foundation, and Richard Carreon, managing director and CEO of ImpediMed. Together they discuss their collaboration to improve the treatment, therapy, and prevention of cancer-related lymphedema.
Ever since she was two years old, Dr. Sheri Prentiss wanted to be a physician.
“That’s all I ever wanted to be,” she says, her voice warm and smiling. “That’s what I put my attention to, and that’s what I became.”
Born and raised in the southside of Chicago, Dr. Sheri was a direct descendent of racial and socioeconomic disparities: her family was poor, and her neighborhood lacked access to essential resources. “There were many things that were remiss and absent in my community when I was growing up,” she explains.
But these inequities only served to motivate her: “We’ve often heard the saying, ‘Be the change you want to see.’”
She worked hard towards being that change, graduating with honors at every level of school and eventually becoming board-certified in occupational and environmental medicine. Dr. Sheri made it her mission and purpose as a Black female physician to work towards health equity, and through her clinical practice, she impacted the lives of thousands of patients and their families.
Then, on October 1, 2008, everything changed.
“I found a mass in my right breast,” recounts Dr. Sheri. “It was cancer.”
What followed was a flurry of surgeries and treatments: a partial mastectomy; a lymph node dissection with the removal of sixteen lymph nodes, three of which were positive for cancer; fifteen rounds of chemotherapy; and thirty-three radiation treatments.
But she wasn’t out of the woods yet.
One year after her treatment, Dr. Sheri developed lymphedema. The swelling in her arm was debilitating and rendered her unable to perform the clinical functions of the job she so loved. “After sixteen years of practicing, I had to completely reinvent myself.”
The Reinvention of Dr. Sheri: Finding Purpose, Health Equity for Lymphedema Patients
Although she could no longer work in a clinical setting, Dr. Sheri found new ways to amplify her voice and continue her health equity mission. She became a national spokesperson for the Susan G. Komen 3-Day fundraising walk for six years and served as a Susan G. Komen African-American Health Equity Initiative Ambassador for another two; she also became certified with the National Speakers Association and traveled as a professional speaker.
“Throughout those eight years of reinventing myself, I discovered people like me,” Dr. Sheri says. “But unfortunately, many people didn’t know their diagnosis of lymphedema — they thought it was just some swelling.”
She realized there was a need to increase awareness on both the medical and the patient side of things. Her identity as a patient and training as a physician offered her a unique perspective, making her a trusted voice who can understand — and speak to — both viewpoints.
“As a physician myself, having treated the diagnosis of breast cancer, I know what lymphedema is — I knew that it could be a risk factor,” explains Dr. Sheri. “But I have to admit that I did not educate myself into the percentage of the risk, the full risk of what was possible.”
In addition to the risk, Dr. Sheri also didn’t fully understand the psychosocial impact of lymphedema: “I didn’t think about the financial impact of purchasing compression garments. I didn’t think about buying new clothes because one limb was much larger than the other. I didn’t think about feeling embarrassed or self-aware when I’m wearing my compression garment at a reception where they’re passing out hors d’oeuvres, and my fingers don’t move the way they used to move.
“I didn’t become aware of that until I became a patient.”
Compressed for Success with the LIVE Today Foundation
Another thing Dr. Sheri wasn’t aware of until she became a patient was the lack of variety when it came to compression garments. The boring neutrals weren’t going to cut it for her colorful personality, so she parlayed her passion and perspective into a business: a designer line of medical-grade compression garments in fashionable styles.
“Patients typically experience a loss of control when they receive a cancer diagnosis, and especially so when it’s followed by a lymphedema diagnosis,” explains Dr. Sheri.
“Although compression garments are constant reminders of our cancer experience, wearing them also gives us control over how we live out our survivorship because we are managing our lymphedema properly.”
But what about the patients who can’t get those medically necessary compression garments? Compression is expensive and can be cost-prohibitive for those without insurance coverage; even with insurance, standard compression sleeves are not always covered.
This is especially true for under-resourced populations such as minority and low-income women, who face several barriers to treatment and care.
“Wearing the compression garment causes patients to take control of their health,” she says. “It brings them back some of that control that I talked about, of losing when first given that cancer diagnosis.”
The foundation also serves to generate awareness of lymphedema, inspiring other survivors to live their life to the fullest while managing their condition as well as educating healthcare professionals on lymphedema and its realities.
“The LIVE Today Foundation and I, as its founder and president, are here and available to help organizations educate physicians, healthcare workers, and patients about lymphedema, including all the psychosocial aspects,” says Dr. Sheri.
“But more importantly, we are here to help any organization with a passion to attend to the needs of the whole patient, to establish a lymphedema prevention program that will truly give their patients a fighting chance at the best possible survivorship.”
How you can help
If you’re interested in supporting the LIVE Today Foundation and its mission, you can do so by visiting the LIVE Today website at www.live-today.org.
Click on “Donate” to make a financial contribution, or fill out the contact form to get in touch and let them know how you want to participate materially within the foundation.
“Patients who choose to volunteer — even if it’s just being available to share your story so that others can avoid any pitfalls you may have experienced — it puts the patient back into control,” says Dr. Sheri. “It empowers that patient towards advocacy, and it further spreads awareness and education.
“We have room for everyone,” encourages Dr. Sheri. “This work is great, and it must go on.”