Suzanne’s
breast cancer was in remission — but her breasts were still so swollen
and painful that she couldn’t bear to have her husband touch her. Almost
in tears, she came to physical therapist Lesli Bell’s South Burlington
office, telling Bell that her pain was like a "migraine in her chest."
Suzanne is one of a large and growing number of breast cancer survivors with breast lymphedema. Although some studies suggest that up to 80 percent of women may develop breast lymphedema after certain cancer diagnoses and treatments, the condition remains largely unacknowledged in the medical community — a kind of "dirty secret" behind the advances in breast cancer treatment. Like the better-known lymphedema of the extremities, breast lymphedema occurs when protein-rich lymphatic fluid accumulates in tissues, causing swelling, tenderness, and infection. However, unlike lymphedema of the limbs, breast lymphedema can be agonizingly painful.
Suspecting breast lymphedema, Bell treated Suzanne with Complete Decongestive Therapy, a combination of lymph drainage, infection prevention, and self-maintenance techniques. After several treatments, Suzanne experienced a 90% reduction in her symptoms and enjoyed a quality of life she hadn’t had for years.
Now Bell and Suzanne faced another challenge. A crucial part of Suzanne’s self-care regimen was the use of compression to prevent the re-accumulation of fluid. Compression stockings were widely available for the arms and legs, but, as Bell had already discovered, there were no effective compression garments for the chest area. Some patients had been able to use sports bras, but these tended to dig into tender tissues, and were too small for large-breasted women like Suzanne. Once, Bell had ordered a custom-made burn vest, but it proved to be so uncomfortable that the patient could only wear it for a few hours a day. The best she could do for Suzanne was to wrap her chest tightly in bandages — a solution that only lasted until Suzanne’s next shower.
Shortly thereafter, however, as Bell puts it, "the stars met" — she found out that the creator of the Jogbra®, Lisa Lindahl, lived only twenty minutes away in Williston. Bell persuaded Lindahl to collaborate with her on a compression bra for lymphedema patients, and the two women became business partners and fast friends.
Combining Bell’s knowledge of the needs of lymphedema and breast cancer patients and Lindahl’s design expertise, they soon created the Compressure Comfort® Bra. Although it looks very similar to a regular bra, the design features of the Compressure Comfort® Bra are very different. For example, because the straps in most bras can block the drainage of lymphatic fluid from the torso, Bell and Lindahl designed the Compressure Comfort® Bra with wide, padded straps that distribute breast weight across the entire top of the shoulder. Bell also insisted that the bra extend almost down to the waistline so that it could deliver compression to the top of the abdomen and mid-back, two areas that are prone to fluid accumulation (especially in women who have undergone breast reconstruction procedures).
The
bra has three rows of hooks and eyes in the back, allowing patients to adjust
it as needed in response to varying amounts of swelling — and even to
make the top fit more tightly than the bottom, or vice versa. In addition, to
help women recovering from surgery, the bra has a front zipper so that women
who do not have full range of motion in their arms can put it on comfortably.
Finally, to ensure that it would be comfortable against tender, swollen skin,
Lindahl located the softest possible fabric to line the inside of the bra.
After designing a working prototype and setting up a manufacturing contract to produce the bra in a variety of sizes, Bell and Lindahl formed their own company, Bellisse®, to distribute the bra.
These days, Bell and Lindahl frequently travel around the country to clinics and conferences, promoting their product and educating the medical community about breast lymphedema. Sometimes their task can be a frustrating one. Not all doctors accept their claims about the prevalence of lymphedema in breast cancer survivors. Bell has also encountered a number of therapists who simply don’t know how to diagnose lymphedema in the chest area, and who tell their patients that nothing is wrong with them.
Moreover, because there is almost no clinical research into breast lymphedema, no one knows how much compression is actually needed to bring about a remission of symptoms. This means that Bell and Lindahl can only claim that their product "increases comfort" rather than "brings relief." However, as Bell says, with the quiet but passionate determination that comes into her voice whenever she talks about her efforts to help lymphedema patients, "We could have waited for years to bring our product out so that we could claim that it was supported by research — or we could just get it out on the market, and let it ‘bring comfort’ to women right now."
That their bra has already done that for many women is indisputable. More and more, Bell and Lindahl are returning from their travels with inspiring success stories. For example, because lymphedema can be brought on or exacerbated by exercise or flying in airplanes, Bell and Lindahl love to tell the story of the woman who, thanks to the bra, was able to ride horses again, or about the woman who bought their bra at a conference and was finally able to take her dream vacation — including a 24-hour flight to Australia.
Recently, the bra has been attracting the notice of the medical community. It was voted "Best New Product" at the premier convention for the durable medical goods industry, and Bell has been invited to speak at a number of conferences. At one such speaking engagement a moderator, herself a breast cancer survivor, introduced Bell by getting up on stage, removing her shirt to reveal the bra, and announcing to the audience, "This bra has changed my life".
For more information about Bellisse® and the Compressure Comfort® Bra (the original style of which is still called "the Suzanne"), visit the Bellisse® website at www.bellisse.com.