Nodding Disease: Success stories under difficult circumstances

24 March 2012

“For a typical 12-year-old who should be the picture of health: physical, overly playful, full of energy, noisy and mobile, Nancy Lamwaka is the opposite. She is skinny, malnourished, hungry, profoundly retarded and immobile.” as Edward Echwalu writes on his blog.

Nodding disease has existed for over a decade in Uganda. According to Wikipedia, the Nodding Disease was first documented in Tanzania in the early the early 60s when the disease. Research shows that the disease is common between the ages of 7 and 13.

However recent cases show that the disease has been found in adults.

In Northern Uganda

Recent statistics show that over 3000 children have been diagonized with the disease and over 200 have been killed by this mysterious disease.

Even though a lot of efforts by international organisations like Center For Disease Control (CDC), USAID in collaboration with the Ministry of Health in Uganda to do research and to investigate the root cause of the disease in Northern Uganda, surprisingly the government has rather taken a slow approach in providing the much needed medical care to the patients. In the meantime the disease continues to kill and haunt children and adults in many parts of Northern Uganda,

Recently Beatrice Anywar, the Woman Member of Parliament for Kitgum (one of the regions with a high number of victims) transported the victims of the disease to Mulago Hospital – the major referral national hospital in Kampala. In a her press statement Beatrice Anywar said that she wanted the victims to come to the hospital such that they could get medical attention. She added that the government had neglected the victims of the disease and that bringing them to the hospital would also help communicate that many other child victims of the disease still need medical attention.

In response to Beatrice Anywar’s voice and selfless act of bringing the patients to the hospital, the women’s movement in Uganda conducted a couple of events lobbying the government to extend medical attention to the victims of the disease. The women have also mobilized Ugandans to support the cause – more information available here. The government responded to the citizens by promising medical support to the victims.

A recent article by Edward Echwalu shows that there have been some success stories: One month later, Nancy Lamwaka registers some “Improvement”.

Her condition was not helped with the fact that Uganda had no definite answers to her cause. And so did the Centre for Disease Control (CDC) team in Atlanta, which is possibly, the world’s center of medical research grappled with samples in their labs hoping to find remedy for the disease which continued to cause mayhem to the children of northern Uganda.

“There is some improvement from the time Medical Team International came with some drugs for her. The doctors have been giving us a variety of drugs (tablets) to experiment. Depending on which one works, we are going to continue like that. – Edward Echwalu writes.

Nancy’s story shows that in cases where adquate medical attention is extended to the victims of the disease, positive things could happen. Hopefully the government of Uganda will be more responsive to the situation and aid efforts made by the civil society to improve on the situation of the victims by extending the much needed medical attention to the victims.