Tuesday August 09, 2022

Friedreich's ataxia patient working to spread awareness

September 22, 2017

Islamabad: Haji Babar Naseer Sheikh is one of the patients in Pakistan to have been diagnosed with Friedreich’s ataxia an inherited disease that causes progressive damage to the nervous system, resulting in symptoms ranging from gait disorder to speech problems; it can also lead to heart disease and diabetes.

Although unable to speak and move, the Babar is determined to help other patients by raising public awareness of a disease, for which a cure is yet to be discovered.

Few years ago, Babar was enjoying a normal life. Having acquired a B.Sc degree, he started supporting his father in his business till such time that he started experiencing neurological disorders and muscular dystrophy that deprived him of the ability to speak and move about like a normal person.

Talking to ‘The News,’ Babar said he was initially unaware about the disease. “I consulted almost all neurology specialists in the country but they were unable to diagnose my condition.

Then doctors told me that I was suffering from Friedreich’s ataxia, for which there is no treatment yet in the world. “I started gathering knowledge and information about the disease and came to know that there are only six patients like me in Pakistan, and around 2,000 patients in the world,” he said and added that now there are around 90 patients in Pakistan are registered with me.

Friedreich’s ataxia usually begins in childhood and leads to impaired muscle coordination that worsens over time. Its symptoms begin between the ages of 5 and 15. The first symptom to appear is usually gait ataxia or imbalanced walk, and then it slowly spreads to other parts of the body.

Babar said he wants to help patients like him by raising public awareness about this disease. To this end, he has established his own NGO ‘Bin Adam Foundation,’ which is solely working for patients of Friedreich’s ataxia.

Babar said, “I do not need any money for my treatment as there is no cure for the disease. All I need is some financial support to be able to print pamphlets and other material for running a public awareness campaign. I am also in touch with other patients of the disease in the UK, India and several other countries.”

Babar said that some doctors in the US are keen to conduct research on him but he is unable to proceed on account of his financial status. “Unfortunately, we don’t have any ataxia specialist here in Pakistan, but should any doctor wish to conduct research on the disease, I am ready to extend all possible support,” he offered.

Babar has requested the government and philanthropists to support his NGO, and has urged other patients to come forward and play their role in spreading awareness about the disease. If anyone wants to help Babar for his noble cause he can contact him on 0345-5882293.