A former St. Albert resident will be honoured next year in Uganda for her work to raise awareness of a painful disease called endometriosis.
The Worldwide EndoMarch charity announced earlier this month that former St. Albert resident Brandi La Perle would have a midwifery hospital in Kampala, Uganda, named after her in a ceremony next May.
La Perle, 34, is a comedian, actress, and model who was born in St. Albert and grew up in Morinville. She is an active advocate for endometriosis awareness and founder of the Worldwide EndoMarch’s Alberta branch.
Endometriosis is a disease caused when tissues similar to those which line the uterus (the endometrium) grow outside the uterus. When those cells later bleed during menstruation, it can cause inflammation, scarring, infertility and excruciating pain. The disease affects about one in 10 women, or about 500,000 Canadians, and can, in rare cases, happen in men.
The Worldwide EndoMarch is a U.S.-based charitable march that aims to raise awareness of this disease.
La Perle said she had been working with Dr. Denis Ssekyanzi in Uganda to get the march started in his country.
Reached by email, Ssekyanzi said he found La Perle after searching for advocates of endometriosis, and was impressed by her dedication.
“Nobody else in our databank can (match) Brandi’s role and influence in advocating for endometriosis sisters globally,” he said.
“Her advocacy is beyond borders.”
Uganda does not have a specialized diagnostic centre for endometriosis and has few advocates for the disease, Ssekyanzi said. As a result, most cases aren’t diagnosed until they are very advanced, leaving patients with severe abdominal or pelvic pain and infertility.
Ssekyanzi said midwives are the point of first contact for most female patients, but most aren’t well trained to spot endometriosis, leading it to it being misdiagnosed. This school, likely the first in the nation to provide specific training on endometriosis, aims to address this gap.
Ssekyanzi said his team felt La Perle would make an excellent role model for students, so they decided to name the school after her.
“Students will learn from her that pain or status can’t stop one from advocating for the suffering. You can use talents to improve lives as Brandi is doing it.”
La Perle, who now lives in Edmonton, said she was shocked to get the news about the clinic two weeks ago.
“I didn’t believe it at first.”
The news inspired her and her friends to arrange a slew of spinoff activities to make the groundbreaking ceremony something special.
La Perle said she plans to travel to Uganda with a number of North American comedians to perform an Alberta Endometriosis Awareness Comedy Show as part of the groundbreaking. She also plans to perform a traditional smudging ceremony there in reference to her Métis heritage.
When she learned she would have a chance to meet Uganda’s First Lady (Janet Museveni) at the event, La Perle said she teamed up with Canadian aboriginal designer Derek Jagodzinsky to find a gift to present to her: a hand-painted bag that depicts a teepee on the Alberta plains at dusk.
“She’s like the Lady Diana of Africa,” La Perle said of Museveni.
“I’m so excited to meet with her.”
La Perle also called up her co-workers at Emerald Marketing International and got them to arrange a photo shoot on Ugandan fashion as part of the trip. The company will also donate a portion of its profits made between now and the groundbreaking to the Ugandan branch of EndoMarch.
Endometriosis has no cure, and is extremely difficult to diagnose as its symptoms overlap with many other disorders, La Perle said. Some patients may have no symptoms at all and are told that it’s all in their head, which can lead to depression and suicidal thoughts.
She encouraged anyone who has chronic pain that interferes with daily activities (especially menstrual or intercourse-related pain) that cannot be explained by other causes (of which there can be many) to get checked for endometriosis.
“You are not alone,” was La Perle’s message to those with endometriosis.
“It is real what they are going through, and they are not alone.”
