September 24, 2013 8:08 pm

Lymphedema research gets $5 million dollar boost

CALGARY- For Dianne Kipnes, wearing high heels is a very big deal.

“It sounds vain or narcissistic but it really is,” the Edmonton woman says with a smile. “For a year, I walked around with both legs bandaged, in what I call my ‘fat pants’ and flat shoes.”

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A cervical cancer survivor, Kipnes suffers from lymphedema caused by cancer treatment.  Kipnes had to have eight lymph nodes removed which damaged her lymphatic system. Instead of draining lymphatic fluid away from her tissues, the fluid was left to pool in her legs causing painful swelling.

“Up to 60 per cent of cancer survivors are or will face a situation of lymphedema, so that’s a very high prevalence in this population for sure,” says Dr. Pierre-Yves von der Weid, a researcher with the University of Calgary’s Snyder Institute for Chronic Diseases.

Lymphedema can also occur in children as a result of a genetic defect. The only treatment currently available is frequent manual drainage using a very specialized form of a massage.

“This is by no means a cure,” says von der Weid. “This is a treatment that has to be performed very, very often, if not daily.”

Problem is, many doctors and care providers don’t know a lot about lymphedema and finding the appropriate treatment or even a correct diagnosis can be a challenge. That’s why three years ago, Kipnes helped open a special clinic for lymphedema patients in Edmonton. Soon, however, she realized more needed to be done.

“People call, they don’t know where to go, their physician doesn’t know what to do with them, they don’t know how to diagnose them,” she explains.  “It’s not that people don’t want to help, they just don’t really know about this disease.”

To help bridge the gap, Kipnes and her husband have donated $5 million for lymphedema education and research.

“The University of Calgary, Faculty of Medicine and the Calvin, Phoebe and Joan Snyder Institute for Chronic Diseases are proud to partner with Dianne and Irving Kipnes in support of their gift,” says University of Calgary President, Elizabeth Cannon. “Their generous $5 million support will enable the University of Calgary to establish a collaborative program exploring research into this condition.”

The gift will be used for education development, the recruitment of new researchers and to develop a new Lymphatic Imaging suite.

“One of the issue we’re facing with studying the lymphatic system is being able to visualize it,” von der Weid explains. “If you can see where the lymphatic vessels and the lymph nodes are, then you can start to see what’s going wrong with those vessels.”

Kipnes says she feels fortunate to have found the treatment she needed to get well.  She now hopes her family’s gift will mean others will also be able to access help.

“People who have not had the proper treatment, their skin deteriorates,” she explains.  “The legs are swollen, you get wounds that don’t heal.  It’s very difficult and eventually you end up in a wheelchair.”

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