A Parksville resident is hoping to shine a light on lymphedema.
The Shine a Light Lymphedema walk is Monday, March 6 at 7 p.m. at the Parksville Community and Conference Centre front entrance.
The local walk is organized by Lynn Holloway who has been living with lymphedema in her left leg for the past 13 years.
The is the B.C. Lymphedema Association’s inaugural lymphedema walk in both Parksville and the province. It has been started to help create awareness for the incurable disease.
Each walker is to either carry a flashlight or wear a headlamp. Pre-register online at www.bclymph.org.
Lymphedema is chronic swelling caused by a buildup of fluid, according to the Canadian Lymphedema Framework. It is a lifelong condition which happens when the lymphatic system is either faulty or damaged and cannot function as normal.
This leads to chronic swelling in the tissues where the lymph flow is blocked. Most often the swelling is in an arm or leg, but it can also be in other places such as the breast, head or neck.
There are two types of lymphedema: primary lymphedema which occurs when a person is born with a faulty lymphatic system and secondary lymphedema which occurs when a person’s lymphatic system is damaged by surgery, radiation therapy or sever injury.
Holloway has the latter.
Holloway said she ended up with lymphedema in 2003 after developing cancer twice.
She said she had her first cancer in 1995 and it was a gynecological cancer. Since cancer spreads through the lymphatic system, Holloway said, they had to cut into her groin to take out the lymph nodes.
She said she remembered at the time telling her mom and husband that she didn't want to do that, but she chose to listen to her doctor.
“Then seven years later I got this massive tumor in the groin where they cut me,” Holloway said.
In 2003, Holloway said she had surgery.
“My surgeon told me: ‘You will have lymphedema after this.’ I didn’t know what it was and I just thought, I can deal with swollen ankles,” said Holloway. “So you get saved from cancer and then there is all this other stuff.”
People who are treated for cancers have a lifelong risk of lymphedema if they have lymph nodes or vessels removed or damaged during treatment.
Since there is a high risk after cancer, Holloway said she asked the cancer agency what they tell patients about lymphedema.
“I’ve talked to them before and I don’t know if things have changed … I said to them, ‘Do you tell people about (lymphedema)? How can we infiltrate the cancer system,” Holloway said, adding that they told her the patients are already going through so much and they don’t want to burden them with this.
Holloway, who is a co-founder of the B.C. Lymphedema Association, said she hopes this walk might help people who are living with lymphedema to seek help. She also said some people are embarrassed to be seen in public.
Holloway said she and a few other women who each have lymphedema got together and created the B.C. Lymphedema Association after being brought together by their massage therapist who realized they were living with the same struggles.
“We thought, if we’re struggling, there are lots of people out there who are struggling as well.”
For more information on lymphedema, visit www.canadalymph.ca.