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Vol. LXVI, No. 13
June 20, 2014
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Ugandan Family Appreciates Visit to NIH, Washington, D.C.

Ugandan visitors (from l) Damasco Okeny, Balbina Lamon and Doreen Lalam visit Lincoln Memorial in May.
Ugandan visitors (from l) Damasco Okeny, Balbina Lamon and Doreen Lalam visit Lincoln Memorial in May.
A family from Uganda with three teenage members affected by a seizure disorder called Nodding syndrome visited the Children’s Inn at NIH in May. The disorder strikes at about age 5 and seizures and their aftereffects impair intellectual and physical development for these children. Although the disorder has been recognized for more than 50 years, the cause has remained unknown. Nodding syndrome currently affects about 3,000 children in northern Uganda and surrounding nations.

The Centers for Disease Control and Prevention has been studying the possible connection between Nodding syndrome and river blindness (onchocerciasis), transmitted by blackflies. It has been working with the Ugandan Ministry of Health in this effort. Through a collaboration between CDC, the Department of State and NIH, the family of 10 and two Ugandan health workers came to the Clinical Center to participate in an evaluation at the NIH Undiagnosed Diseases Program.

The affected children stayed at the Clinical Center; other family members stayed at the Children’s Inn and visited the hospital daily. The simple rural way of life for the family members is in great contrast to the sights and sounds of the world’s largest hospital dedicated to clinical research. Speaking a native dialect called Acholi, family members relied on translators to understand their English-speaking clinicians. The meeting of the two world cultures provided an opportunity of discovery for both parties—one that may offer clues for the children who suffer from the debilitating effects of Nodding syndrome.

At the foot of the Lincoln Memorial are (from l) Josephine Aryek-Kwe (nurse/translator), Lalam, Lamon and Okeny.
At the foot of the Lincoln Memorial are (from l) Josephine Aryek-Kwe (nurse/translator), Lalam, Lamon and Okeny.

At the inn, the Ugandan family discovered the delights of bagels with cream cheese for breakfast and enjoyed relaxing on the second-floor deck in the afternoons after their days at the CC. Inn staff also took the mother, father and an older sister (along with a translator) to see the monuments in downtown Washington, D.C. To a family that has experienced intense civil war and been left with scarce resources, they were not only fascinated by the monuments they visited (Washington Monument, Lincoln Memorial, MLK and FDR) but also captivated by the number of green trees they passed on the highway and by taking “selfies” on their guide’s phone.

Other highlights for the family included: seeing a police officer on a horse, watching the paddle boats in the Tidal Basin across from the Jefferson Memorial and eating a dinner that felt “exactly like home.” When the family returned to the CC, the nurse and doctor traveling with them said they had never seen the dad smile as much as when the mom described the “unimaginable” things she had seen in Washington, D.C.—providing a much-needed boost in spirits after all they had gone through to get from Uganda to NIH.

 

 


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