Philipa Kibugu became a breast health advocate

Philippa Kibugu Decuir

Kibugu is committed to helping women who have no hope of survival

WHEN her sister died from breast cancer in 1986, she feared the worst. Eight years later, she was diagnosed with the same illness, but Philipa Kibugu Decuir, lived to tell her tale. Today, this mother of two, wants to give a chance to thousands of breast cancer victims in East Africa, writes Stephen Ssenkaaba.

FOR the past 10 years, my survival has become a tool to teach and touch women in my life as a breast health advocate, through life-changing information like early detection, self-awareness and regular clinical screening,” Kibugu says.

Kibugu’s passion springs from her traumatic experience in 1994, when she was first diagnosed with breast cancer.

“I was devastated,” she recalls. Kibugu’s cancer started with a piercing pain in the breast which for a month or so, her doctor dismissed as a “minor ailment”. After insisting on more check-ups, a diagnosis confirmed the presence of breast cancer.

Even though not terribly surprised at the discovery, Kibugu was shocked by the doctor’s revelation.

“I was scared… that I might die and leave my family. I thought about writing a will. I thought about my parents and how they would receive the news. I felt angry. I cried.”

A gruelling surgery and one year of chemotherapy left her drained. “I became weak, I lost hair, my tongue blackened, I lost appetite and would throw up all the time,” she narrates.

The chemotherapy almost incapacitated her. “I could neither walk nor talk.”

Beyond the physical pain, lay an even stronger emotional trauma. “The thought of not being able to attend to my young children tore me apart,” she says.

It was equally difficult on her family and friends, who sometimes did not know how to react.

Because of her low immunity, she was isolated from her beloved ones. Through all her trials, Kibugu relied on the support of her family, friends and the best medical attention, to pull through.

After a couple of years, her health improved. But as she got better, she felt, not lucky, but sad, that while she had access to the best health facilities and information, thousands of women in her homeland waste away at the hands of the deadly disease.

Kibugu recently founded Breast Cancer Initiative East Africa Inc. (BCIEA Inc), a non-profit organisation dedicated to promoting advocacy, awareness, education, empowerment and research on breast cancer in Uganda, Kenya, Tanzania, Rwanda and Burundi.

She says BCIEA will partner with global health, research, medical institutes and business communities to educate women about breast cancer.

“The organisation will, among other activities, eliminate myths about breast cancer, teach about breast self-examination and risk factors, encourage clinical breast exam and use of mammography,” she says.

“It will also disseminate information about the disease, available treatment options, advocate increased access to treatment facilities, especially in rural areas, as well as participate in research.”

Kibugu says BCIEA will have its main office in the US and branches first in Uganda, Rwanda, Kenya and later other countries.

Kibugu says along with material support, women in Africa need to be equipped with knowledge to detect and treat breast cancer. She says BCIEA will help to bridge the information gap and enable women to understand and make the right choices about breast cancer.

Kibugu says while the impact of major strides in early detection and treatment is increasingly being felt in the US and other developed countries, the picture in East Africa is dismal.

“In East Africa, breast cancer is one of the neglected diseases and the majority of its victims hopelessly wait for their death,” she says.

Through her membership at Sisters Network, an advocacy and support organisation of African American women, Kibugu compiled information and designed a programme that would help educate women in East Africa on breast cancer. Registered this year as BCIEA Inc, the programme is ready to take on the mantle of eradicating breast cancer in East Africa.

The organisation is planning to launch a Fund and Friend campaign in the US later this year to raise awareness and support for its programmes.

Through it all, Kibugu feels that her ordeal was not so much a burden as a life-changing lesson.

“I would never change anything about my situation because whatever I went through made me a better person,” she says.

Kibugu was born in Rwanda, raised and educated in Uganda and lived in Kenya for 10 years, before relocating to the US, where she lives with her husband Lee Decuir. The couple has two children and two grandchildren.

She is taking the battle against breast cancer to the front line, helping other women who have no hope of survival.