Breaking Taboos in Kosovo

A Young Kosovar Launches a Campaign to Support People Living with a Stoma

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Arta Uka (right) with the Director of the Main Family Health Center in Lipjan, Dr. Agim Krasniqi (left)

When Arta Uka’s mother was diagnosed with colon cancer, medical treatment included removing her rectum requiring her to live with a permanent stoma.

Uka, a policy analyst in Kosovo, and her family knew almost nothing about what this would entail, so she began searching for resources.

What she quickly discovered was that there was no support for the people in Kosovo living with the same condition.

Stomas are surgically created openings on the surface of the abdomen that divert the flow of bodily waste. Patients with stomas use stoma bags, which adhere to the abdominal opening and collect the waste.

As such, they need to be educated about how to manage and care for their stoma. But Uka couldn’t find any stoma nurses in Kosovo and it was difficult to get medical advice. Basic information did not exist in Albanian and Serbian, languages spoken in Kosovo.

So she founded a program called “Living in Kosovo with a Stoma.”

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Arta’s mother, Naime Uka who inspired her to help the 5,000 people in Kosovo living with a stoma.

“I thought, if I am helping my mom, why not do this for other people as well?” she explains.

Uka’s mission is to increase public understanding of what it means to live with a stoma, inform ostomates of how to care for and manage their stoma, and provide them with in-kind support, such as stoma bags. She is also creating a network of ostomates in the country through her advocacy.

She explains: “People with a stoma in Kosovo don’t have health insurance, and don’t get any ostomy supply by the state or any other organization. We are trying to connect with doctors and nurses in other countries and get them to help people who need it in Kosovo.”

Uka recently received a grant to support her project as part of World Learning’s Advancing Leaders Fellowship. The award helps World Learning alumni build social entrepreneurship programs in their communities around the world. Previously, Uka took part in the Kosovo Leadership Transformation Program, which provides scholarships to Kosovo youth to study in the U.S. in an effort to develop leaders that will drive positive economic, social, and political change in the young country.

As part of the program, she earned a three-month professional certificate in management and leadership at the University of California, Berkeley last year.

Among her other achievements, Uka is the founder and first President of the European Young Cell Alumni (EYCA), an NGO funded by the beneficiaries of the European Commission’s Scholarship Scheme. She also helped establish the first Ostomy Association of Kosovo.

Her efforts are already making a difference.

She says the World Learning grant helped her create a web page with information about ostomies as well as print and distribute 150 brochures in local languages. She’s also launched a dialogue with the Ministry of Health on the challenges and priorities of ostomates in Kosovo and bought three media ads targeting the general population in order to familiarize the public about the issue.

“We’re breaking taboos,” Uka notes.

The project has increased the self-awareness of ostomates, their friends and families, as well as wider society by openly discussing what it means to live with a stoma.

Since she began her campaign, at-home visits have been made to 1,000 ostomates and their families. The project also created safe environments where ostomates gather in small groups to share their experiences and information, helping them overcome stigma.

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Arta preparing the delivery of ostomy bags. All bags are checked for the quality, size, type, and are selected according to the ostomate’s needs.

With support from the UK Colostomy Association and Embassy of Luxembourg in Kosovo, Uka’s project has donated more than 1,000 stoma bags to ostomates in financial need.

Perhaps one of the most important outcomes for Uka is the new understanding among people living with a stoma that they don’t have to lock themselves away.

“Living a life with stoma doesn’t mean having a passive life,” she says. “There have been very important discussions on how ostomates can live an active life, just like everyone else.”

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