As befitting the name and tagline — “Serving the Seating & Mobility Professional” — on our cover, when we’ve done clinically focused stories, we’ve concentrated on topics undeniably and closely linked to seating, positioning and mobility. Kyphosis, for example. Dystonia. Spinal cord injury.
This month, we went slightly outside the box for our story on lymphedema, a disorder of the lymphatic system most commonly associated with breast cancer survivors, but truly a condition that also impacts newborns, adolescents and adults. Not all lymphedema patients require seating & mobility support. But those who do tend to be highly complicated cases, indeed. Lymphedema causes fl uid accumulation and swelling, most frequently in the limbs. That can lead not only to very heavy arms or legs, but also to incredible asymmetries, if only one leg or arm is affected while the other leg or arm remains a “normal” size.
I became aware of the complex seating & mobility challenges of lymphedema through a presentation by Motion Concepts’ Stephanie Tanguay, OTR, ATP, who generously contributed to this month’s article.
Another major contributor was Saskia R.J. Thiedens, RN, a rather amazing woman who founded the National Lymphedema Network more than 20 years ago. Saskia says she started the organization because of an incident that occurred when she was running a post-operative care facility in San Francisco. She met a female patient who’d had reconstructive surgery after breast cancer, and Saskia — being a clinician — was concerned to see that the woman’s arm was very large and swollen.
“I thought, ‘Oh my gosh, she’s having an allergic reaction,’” Saskia recalled. She called the woman’s physician, who replied, “She’s had this for nine years. Don’t worry about it; there’s nothing you can do for it.”
“What is it?” Saskia says she asked next. The answer, of course, was lymphedema — and Saskia’s interest was born.
Unfortunately, at the time Saskia became aware of and interested in learning more about lymphedema, there wasn’t a lot of information available. The medical community believed it was a condition that only got worse and could not be treated.
“Today, we know a lot more, because so many more people have become involved and interested,” Saskia says. “But there’s still a huge population of people who have swollen limbs. They still go and see the doctor, and the doctor throws his arms in the air and says, ‘There’s really nothing we can do.’”
Of course, there are treatments today, and thanks to lymphedema patients and people like Saskia, there is an organization that has a biennial, international symposium that sounds similar to our industry’s own International Seating Symposium.
And while Saskia knows there are PTs and OTs who specialize in working with lymphedema patients, she was thrilled to learn that there are also people like Stephanie and companies such as Motion Concepts, who are dedicated to ensuring independence, safety and mobility for as many consumers as possible — no matter how complex the situation.
Both the complex rehab technology industry and the movement to educate everyone about lymphedema are young, relatively speaking. But by working together in the education and advocacy processes, perhaps we can grow older together — as others grow wiser because of our efforts.