This was stated by medical experts at a seminar, ‘Walk On Wilson’, held at the Arts Council of Pakistan, Karachi. The session was organised by the Welfare Organisation for Wilson Disease, in association with the Wilson Disease Association America and the Arts Council. The event aimed to shed light on the disease, its causes, prognosis and symptoms and was attended by doctors, students and those affected by the condition.
Prof Dr Aftab Ala, from the University of Surrey, UK, said that that he had come back to Pakistan to spread awareness about the condition based on his 15-year research on the topic.
According to Dr Ala, the disease is very much treatable, if diagnosed in time. He said that the therapy they use on patients abroad can also be used in Pakistan, warning that the condition could also cripple the brain at times. Once detected, patients must contact their doctor immediately and seek treatment after which taking medicines on time can help recover from the condition. Dr Ala said that usually, the symptoms of the condition begin to manifest at a young age, but it can occur at any age.
Symptoms of the disease include swollen skin, bloated stomach, bloody vomits and pain. Wilson patients also experience difficulty in walking and digesting food, while some may exhibit aggressive behavior, anger and anxiety.
The president of Welfare Organisation for Wilson Disease, Irfana Jabeen Khan, told The Express Tribune that most people were not aware of the condition. “Even I did not know anything about the disease until some years ago,” she said. “I got to know of the disease when a case emerged in my family. It was then that I learnt that the disease is hereditary in nature and that Pakistan did not have any doctors who were trained to treat the ailment,” she added.
Research on the condition is being carried out across the world. The United States, in particular, is focusing on the research and Khan is working with US research organisations as a volunteer for the past four years.
Khan said that she could not find any organisation in Pakistan which was established to serve patients afflicted with the disorder. According to Khan, the condition is onset by an excess of copper within the body. “The excess copper accumulates in the brain or the liver after which it starts affecting other body parts,” she said, adding that the condition seriously reduces brain activity and motor skills while the patient may also have trouble communicating with others.
Lectures and presentations were given to educate the participants regarding signs, symptoms and preventive measures to mitigate the effects of the disease. In addition, certificates were distributed among the volunteers and participants who won the ‘Paint Your Patienthood Copper’ competition at the event.
