Can’t flex muscles after dusk, Kerala man gets disability certificate after 25-year wait

Pariyaram: Naufal Maloor, 43, dreads evenings. It is around that time when his muscles shut down. All he can do is lie still on the bed. He dozes off for the night. In the morning, he will be awake, still he can't move until the muscle weakness dissipates. 

When he finally gets on his feet, nothing seems wrong with him. For 25 years, he tried convincing the government departments about his rare disability, hoping that a certificate would help him secure a government job.

Having reached out to many officials and institutions for help, only to be turned away, Naufal recently sent an email to Chief Minister Pinarayi Vijayan and Health Minister Veena George. He didn’t hope to hear back at all, but in just a few minutes, he received replies from both of them. Soon, he was called to the hospital, where doctors checked on him and gave him a disability certificate declaring 70 per cent disability. “If I got this 25 years ago, I would have gotten a job," he says. 

The condition that Naufal suffers from arises out of two related genetic disorders: Paramyotonia congenita (PMC) and Hyperkalemic Periodic Paralysis (HPP). “These diseases manifest as a loss of control over the muscles and limbs of one's body, causing paralysis. The disease, which has no known cure, stems from a molecular level and is influenced by the degree of potassium present in the body. Symptoms may be managed with medications. But it need not always work, as was the case with Naufal,” says Dr Sudeep, Medical Superintendent at the Government Medical College, Kannur.

During his childhood, Naufal had suffered from seasonal paralysis during November and December, when he would be unable to move his body. “I would just lie there like I am dead,” says Naufal. However, the hopes that it might go away as he aged faded as the condition gradually worsened into permanency.

Growing up, the Pariyaram native sought answers for his rare malady. But to his disappointment, doctors could not make an accurate diagnosis. “The disease is too rare; it is often not detected through standard tests, so it is very likely to go undiagnosed,” Dr Sudeep says. For years, he would try different treatment options from Allopathy to Ayurverda, but to no avail.

Even after the diagnosis, he was no closer to relief. A disease with no cure meant no end to his struggle.

In his attempts to embrace the affliction by applying for a disability certificate that could offer him some social relief, he was riddled with challenges yet again. At first, the lack of diagnosis stood in the way. But even as that hurdle was crossed off, his disability could not be categorised into the options that were listed in application forms, keeping him away from the much-needed certificate. As per the provisions of the Rights of Persons with Disabilities (RPWD) Act, 2016, Naufal's condition is not enlisted as a disability among the various other types categorised as differently abled. This prevented doctors from certifying him as disabled.

While he worked as a temporary employee in multiple positions, he could not secure any permanent positions without these documents. As he approaches old age, Naufal worries about his future. “When paralysed, the deadweight is too much for my wife to handle by herself, and if the disease worsens, I don't know what we will do,” says Naufal.

But the disability certificate is merely a path to the security that Naufal seeks. “Not a lot has changed due to this, though. The disease hinders me just the same, and I still haven’t secured a government job, any government job, as I had hoped to,” says Naufal.

Only three months remain until Naufal turns 44. Even as another year is crossed off his life, his dreams continue to be deferred. He continues to hope for a cure that may turn his life around. “I want people to know about this condition, maybe then someone can come up with a cure,” says Naufal. For him, the pain hasn’t gone anywhere; it is merely tucked away under familiarity and hope. 

Kerala Public service commission offers age concession upto 15 years to the blind, deaf and dumb and 10 years to the orthopaedically handicapped persons, over and above the existing upper age limit prescribed for direct recruitment to posts in various services of the state.