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Learning to Live with a Disfiguring Disease

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Learning to Live with a Disfiguring Disease

Learning to Live with a Disfiguring Disease

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  • <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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NPR's Joanne Silberner has been reporting on health issues in Nigeria. When she traveled to the city of Jos in the central part of the country, she found something distinctly Western: a support group for patients with an incurable disease.

JOANNE SILBERNER: John Umaru is the son of Nigerian missionaries. Because his parents moved around when he was growing up, he speaks eight languages and dialects. That helps him run his quarterly meetings.

Mr. JOHN UMARU (Founder, Hope Club): I would like to take some introductions of who we are here.

Unidentified Woman: My name is...

SILBERNER: Six men and five women sit on white plastic chairs under mango trees in the courtyard of a public health mission sponsored by the Atlanta-based Carter Center.

Mr. UMARU: So this is the members of the Hope Club for people who have lymphedemas.

SILBERNER: Lymphedema here means grossly swollen legs covered by thick, pitted skin. It's the result of lymphatic filariasis, a disease transmitted by mosquitoes.

Mr. UMARU: He has a question.

Unidentified Man: (Speaking foreign language)

Mr. UMARU: He's asking if one has this problem, does it mean that you are going to have it for the rest of your life or there is some hope?

SILBERNER: Umaru tells them no cure, but yes, there is hope. He teaches them what they have to do.

Mr. UMARU: Don't allow your leg to be infected. Keep it clean always. If you have a cut, treat it early. By doing that you save yourself the repeated pains and infections that increases the swelling.

SILBERNER: John Umaru introduces a group member who's followed all these steps carefully. His name is Hamisu Isu.

Mr. UMARU: I have a picture of him before and a picture of him now, which has shown a lot of improvement. Excuse me one minute. Let me get it.

SILBERNER: He comes back and passes them around. Umaru steps aside and tells us Isu was in very bad shape initially. He wasn't working and was rejected by most of his family.

Mr. UMARU: He was actually brought in because he couldn't walk, until now that he can come and he's physically active and the legs are looking clean and good; this shows the others that, yes, even if they were like this, there is hope that some day I'm going to be better too.

SILBERNER: Isu is here and natty in his spotless white robe and carefully wrapped brown and tan turban.

Mr. HAMISU ISU (Group Member): (Speaking foreign language)

SILBERNER: Isu tells the group he's doing well now and selling T-shirts in the marketplace. Today he is getting his teaching certificate, and he is engaged to be married.

But there are some sad stories too. Twenty-year-old Helen Adamu is at this meeting. She has an exquisitely beautiful face and a grossly disfigured leg. It is the first time she's come here. She sits quietly, always looking down, never talking. John Umaru says she didn't come to the next meeting, but he always has hope, and he hopes she'll come back again. He's not giving up.

Mr. UMARU: I see them when they come in, and now I'm seeing them improving and happy, and that gives me joy.

SILBERNER: Joanne Silberner, NPR News.

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