Dianne and Irving Kipnes (centre) are congratulated by Alberta Health Services president and CEO Verna Yiu at the announcement today of $7 million in gifts from the Dianne and Irving Kipnes Foundation and the University Hospital Foundation to establish a new chair in lymphatic disorders in the 海角社区's Faculty of Medicine & Dentistry. (Photo: Mike Brown)
In 2009, Dianne Kipnes and her husband, Irving, were on a trip to Berlin, Germany, when she noticed pain in her legs while sightseeing. It wasn't until she returned to her hotel room that she saw just how bad it was.
"I took off my jeans and my legs were three times their normal size and covered with large red scaly patches," she said. "It was a shock."
A trip to the emergency room ended with a diagnosis of an allergic reaction and a prescription for an antibiotic that had no effect. It was the first of several wrong diagnoses to come over the following month, each providing few answers and little relief.
It wasn't until she returned to Edmonton that an appointment with a urologist ended with a correct diagnosis of cellulitis. A second consultation with her surgeon at the Cross Cancer Institute revealed that the cellulitis was related to lymphedema-a side-effect of her treatment for cervical cancer five years earlier.
"And there was no treatment available, I didn't know where to go, I didn't know what to do," she said.
"I just was lost and nobody seemed to have any answers. I was in the wilderness, so to speak. I can tell you it's very frustrating when you're looking for some diagnosis or knowledge and you can't find anybody that can help you. As a patient, you don't want to be the expert."
About lymphedema
- Lymphedema is a chronic condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system.
- It affects about 300,000 people in Canada and up to 250 million people worldwide.
- There is no cure and no effective drug treatments. Treatments to reduce swelling, such as massage and compression, provide limited relief.
- 15 per cent of lymphedema cases are related to cancer. The rest are related to obesity, disability, surgery and genetics.
Chronic condition not well understood
Lymphedema is a little researched and not well understood chronic condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. Underreported, under-recognized and underdiagnosed, the disease can be genetically inherited or acquired as a consequence of surgery, trauma, cancer therapy, inflammation or infection of the lymphatic system.
While prevalence is difficult to estimate, according to the Alberta Lymphedema Network, approximately 300,000 people in Canada are affected by lymphedema. It has been estimated to affect nearly 60 per cent of cancer patients, and as many as 80 per cent of breast cancer patients who received a mastectomy. If left untreated, there is a risk of loss of limb function as well as the onset of chronic infections. Current treatments include manual drainage using a specialized form of massage and wrapping limbs. Some European centres are also experimenting with lymph node transfer, a form of auto-transplantation.
Her search for answers led Kipnes and her husband to become a driving force for better research and therapeutic treatments for people living with lymphedema in Alberta.
The couple want to ensure Alberta is at the forefront of lymphatic research in the world and to do so, the Dianne and Irving Kipnes Foundation announced a $5-million commitment to establish the Dianne and Irving Kipnes Chair in Lymphatic Disorders at the 海角社区's Faculty of Medicine & Dentistry. In addition, the University Hospital Foundation (UHF) and its community of donors have matched a gift of $1 million made by the Dianne and Irving Kipnes Foundation through the University Hospital Foundation, increasing the total commitment to this chair to $7 million.
The endowed chair is the first of its kind in Canada.
Underdog disorder
"We're at the ground floor of this because there really is no substantial collection of knowledge about lymphatic disorders right now," said Irving Kipnes.
"These are not life-threatening disorders but they are life-altering," said David Eisenstat, chair of the 海角社区's Department of Oncology.
"Because most people live with this disorder and it doesn't kill them, they're just told, 'You're a survivor. You should be thankful and good luck to you.' It's an underdog disorder. It's not been front of mind in the academic world or in the clinical world. So, to me, this chair is a wonderful opportunity to raise awareness and to say, 'This is important, so