Today, March 6, is being recognized as World Lymphedema Day in the City of Trail.
Council’s proclamation is a way to raise awareness about lymphedema, one of the most underdiagnosed conditions in the world.
Creating awareness about this incurable – and socially isolating – condition came by request from Willa Condy Seymour, a Trail woman who has lived with the debilitating disease for a number of years.
“We need to bring attention to lymphatic diseases and lymphedema in our cities and province in hopes that new treatments will be discovered and so that we will one day have a cure,” Condy Seymour said. “This all starts with public awareness.”
So what is lymphedema, also known as “lymphatic obstruction”?
It is an incurable condition where excess fluid collects in tissues causing edema, which is the medical term for swelling.
The lymphatic system is a part of the circulatory system and vital for immune function. Lymphedema is caused by a blockage of this system. The condition commonly affects the arms, legs, and sometimes the head, genitals, or chest.
In Condy Seymour’s case, she lives with total body lymphedema.
“I developed facial lymphedema when I turned 50,” she shared, mentioning her condition called Lymphedema Tarda took three years to diagnose.
“I had a birth defect and was born with my left side of my face underdeveloped, with what they used to call a ‘wry neck,’” Condy Seymour explained. “My lymphedema started in my head but did not stay just in that region. It spread down to my arms and then continued so I have total body lymphedema. I was lucky with support from my family and my massage therapist and doctors, I started to fight back.”
By wearing a compression garment throughout the day, Condy Seymour reduced the swelling in her head by two inches. To maintain her head size, she still sleeps in night time garments.
“When I travel I still wear my facial compression garment and I always pair it up with earrings and a shirt stating Lymphedema Awareness,” she said. “‘I wear compression daily on my legs and have compression sleeves for my arms that I wear when I am travelling or having a bad day.”
Condy Seymour is one of 300,000+ Canadians living with the disease.
“Lymphedema can be hereditary or acquired as a result of cancer treatment or physical trauma,” she noted. “Up to 30 per cent of women who survive breast cancer will get this debilitating disease that results in the accumulation of lymph fluid in the limbs when the lymphatic system is damaged.”
Survivors of many types of cancer including head and neck cancers and melanoma are all susceptible as are veterans suffering from battle injures, those with post-surgical trauma and children born with lymphatic disease.
“Currently, there is no cure and little help with essential daily compression garments or medical interventions from health insurance,” said Condy Seymour. “The effects are lifelong, drastically affect quality of life and can lead to loss of limb function and even a shortened lifespan.”
To recognize the day in Trail, Condy Seymour invites locals to the Kiro Wellness Centre today (March 6) from 1-3 p.m.
“We have a small support group in our area and we meet up during the year to catch up and share our ‘lymph’ journeys,” she said. “But one of us is always willing to talk. They are not alone.”
For more information contact Willa J. Condy Seymour via email at pokie1mac.com or visit the BC Lymphedema Association website at bclymph.org.