Chennai: Life was all well for Zoyeb Mohamed Zia until the age of 12. He was a footballer, swimmer and speaker. However, dawn of the doom’s day marked an end to the activities. When he was in class 10, Zoyeb’s limb coordination stopped, giving rise to plethora of malfunctions in him.
A perturbed father, Iftikhar Mohamed Zia took him to several hospitals across the country for seeking treatment. However, nothing helped. It took years for Zoyeb’s parents to identify the illness.
“For the past 10 years, I have been living with a rare condition called ‘undiagnosed ataxia’ that has led me not to function on my own. I require a support whenever I walk,” Zoyeb tells News Today ahead of World Rare Disease Day (28 February).
Slurred speech, lack of limb coordination and sluggish eye movements are the other symptoms that he has been showing for a long time. Since the condition is a degenerative neurological disorder, it has worsened over time.
“I can manage oral lectures at work. However, I require assistance when I have to travel and when I have to dissect an organism,” shares 25-year-old Zoyeb.
However it did not deter Zoyeb, although he was psychologically affected with the rare condition, he has braved all odds and now works as an assistant professor at New College, which also happens to be his alma mater.
With keen interest in zoology, he took up the subject as his majors, completed M.Phil, appeared for State Eligibility Test (SET) and secured the job.
“He studied in a normal school though it was a late onset. At school, the teachers were extremely kind enough to organise special coaching for Zoyeb as he missed several classes as we were constantly travelling for his treatment,” says his father, who quit his job as a garment exporter soon after one year of observing his son exhibiting rare symptoms.
It was not easy for his family, for Zoyeb, reached his saturation point and decided to give up everything. However, constant motivation, support and perseverance has paid him with a dignified job.
“Doctors with whom I consulted, were aghast on observing my son and even approached the eight odd centres for identifying such rare ailments in the country that failed to provide an answer to my quest that I have been chasing for a decade,” adds Zia.
Driven by his son, two years ago he came in touch with Organisation for Rare Diseases India (ORDI) and spearheads Tamilnadu chapter.
As part of the movement, the team has also established Rare Disease Care Coordination Center (RDCCC) in Bengaluru, Mysore and is in the process of setting-up one here in Chennai.
“We have been constantly creating dialogues with pharma companies for initiating studies and also approaching government for intervention and financial assistance. It takes seven years to detect that it is a rare disease,” shares Zia.
On governmental intervention, Zia informs, “Despite several patients diagnosed of such maladies, there has not been any registry maintained by the government. It should also be covered under insurance schemes.”
Presently, patients with rare diseases are not recognised under ‘People with Disabilities’ banner as the problem is not physical, but physiological.
To connect with patients with similar disorder, ORDI has set-up a toll-free helpline (+91 8892 555 000) that offers counselling service and help with reaching out to right doctors in the country.
BATTLING IT TOGETHER
It should be noted that Zoyeb is not alone in the war, with him are about 200 other such people in the country who are battling with one of the roughly 25 types of ataxia.
CALL FOR INTERVENTION
In some rare conditions are due to non-secretion of enzymes and artificially infusing them in patients is not financially viable if they are from underprivileged class of society. Zia further shares that there are 7,000 rare diseases across the world which calls for policy-level changes for which several organisations are voicing out.
