Many people may not know about lymphedema, but it is a disorder that affects many people.
© Herald photo by Jodi Schellenberg
Noreen Campbell, a registered nurse and wound clinician specialist, talks at the Lymphedema Diagnosis, Management and Care Symposium on Saturday at the Travelodge.
On Friday and Saturday, the Lymphedema Society of Saskatchewan hosted a Lymphedema Diagnosis, Management and Care Symposium at the Travelodge in Prince Albert, with two main guest speakers Dr. Anna Towers and Noreen Campbell.
Campbell is a registered nurse in British Columbia, who is heavily involved in wound management and has lymphedema secondary to maxillary cancer and lymph node surgery.
“I was asked to come and speak about how wounds heal when a person has lymphedema, how our clinic was managing lymphedema and what is a practical approach to the care of lymphedema patients,” Campbell said.
Towers is the associate professor of oncology at McGill University and the director of the Lymphedema program at the McGill University Health Centre.
“In my talk, both what Dr. Tower and I have tried to do is to simulate the experience people will have going through the system,” Campbell said.
“One of the things in my talk I try to stress as a nurse is what is the person like coming through the door,” she added. “Our most important challenge is do they have the correct diagnose because lymphedema, lipedema and cancer-associated edema is really confused with other diagnosis.”
Instead of thinking about the condition as lymphedema, Campbell and Towers agreed that health-care professionals should think of it as chronic edema instead.
“In Saskatchewan there are probably up to 11,000 individuals who are living with lymphedema and most of them are undiagnosed and untested, so we need more education for health professionals,” Towers said.
“One bit of education that needs to happen is there’s an infection called cellulitis,” she added. “It is an infection of the tissues under the skin that is common, especially in legs -- these people present in hospital and they are treated for the infection and sent away.
“What health professionals and doctors are not aware of is that the vast majority of these patients -- up to 85 per cent -- have underlying chronic edema or lymphedema that needs to be treated.”
Campbell said once the diagnosis is correct, there is a better chance of prescribing the proper treatment.
“The other thing that I was committed to coming for is since I am a certified wound clinician and I have had cancer of maxillary and a preflap of my leg (was used) to rebuild my mouth and I do have lymphedema as a result of my surgery,” she said. “I think it is encouraging for people who have lymphedema to have people who understand the clinical field.
“It is also important for people who are in the clinical field in a way to look at the other side of the bed and to see how, in some cases, how beneficial our work is,” Campbell added. “Also, at times, to see how we have to modify our practice in order to meet people’s needs better or to learn different skills or approaches.”
Another message Towers wanted attention brought to is that half of chronic edema, which is internationally being recognized as being equivalent to lymphedema, is most likely not due to cancer.
“It is due to obesity, people becoming more and more obese as a society and that can lead to lymphedema, and people with insufficient veins in the legs … are not be treated properly with compression, so they develop lymphedema,” Towers said. “There is this very large group that is being under recognized, undertreated and we see they 30 or 40 years later with very advanced lymphedema, wounds and cellulitis and it leads to increased mortality.”
Education of the health professionals and government policy makers will be key to getting people diagnosed and treated early, she said.
Not only is there not a lot of education out there for health professionals, the other problem is that lymphedema is a hidden epidemic, Campbell said.
“It is not until people start to display, in way, their problems with lymphedema or swelling” that it is noticed, Campbell said.
Since Campbell also suffers from lymphedema, she wears tape on her neck to help keep down the swelling.
“If people want to ask me what is wrong with my neck, I get an opportunity to tell them about lymphedema,” Campbell said.
Since it is important to start more conversations about lymphedema, Campbell loves the decorated sleeves and fancy socks many patients wear because they “become a conversation piece.”
She would like to see more happen to help those with lymphedema. In British Columbia where Campbell works as a wound clinician, she wrote a proposal on what to do to help more.
“After I canvassed patients I realized that 25 per cent of our challenging patients were secondary lymphedema patients,” Campbell said. “What I wanted to see was a centre that developed clinical expertise that the people could come to, but at the same time that we could take that expertise out to that person’s home care nurse, to that person’s home physician and work with them to build up their expertise related to that individual and then be used sporadically as consultation, not as a dependent service.”
The proposal was turned down, to her dismay.
“I find it astounding that we are willing to give haphazard care, which is very expensive and yet hesitant about approaching a clinical problem from a systematic manner,” Campbell said.
She is impressed with the work the Saskatchewan government has been doing to help lymphedema patients.
“There are some treatment options, the pumps have been purchased,” she said. “Although from a lymphedema clinical view, there is a lot of ambiguity about the pumps, but it is a giant step compared to many of the other provinces where people are responsible for buying everything themselves.”
Both Towers and Campbell said the symposium was a great place for both patients and heath-care professionals to learn more.
“You are very fortunate when you come to a meeting like this, everybody wants to be here,” Campbell said. “This is an incredible meeting -- this is one of the biggest ones I’ve been to.”
“I think, for the first time, this association has been able to attract many health-care professionals, including physicians, to this conference because it is not something that is normally attractive to health care professionals,” Towers added. “They think lymphedema is uncommon, so we have to have strategies to attract more health-care professionals but this is a good start.”