A survivor and warrior: Ex-soccer striker diagnosed with rare disorder turns into inspiration
Anuraag Singh profiles Jeevan Kaneria, who not only survived a rare autoimmune disorder called the Guillain-Barre Syndrome (GBS) but went on to serve the role of a counsellor as well
MADHYA PRADESH: An incisive striker who skillfully penetrated through the most resolute defence mounted by the opposite side to score goals at will in football arenas during his schooldays in Indore was confined to bed for over 20 months due to a rare autoimmune disorder called the Guillain-Barre Syndrome (GBS) while in his most productive years.
But thanks to his steely willpower, family support and efficacious medical treatment, Jeevan Kaneria (41), a former media professional, not only made a recovery but has turned into a real-life warrior inspiring others afflicted by the disorder to battle the disease with aplomb today, he is recognized as a ‘GBS Warrior’.
Kaneria was affected by the rare disease when at the age of 34, he was working in the circulation departments of reputed Hindi and English dailies in Indore. “After successfully completing the formalities related to the closing of the financial year on March 31, 2016, I returned home and slept. The next morning, like every other day, I woke up at 4 am to go for early morning field duties but was stunned to find that one of my legs had no sensation. Subsequently, I realized that there was numbness in my hands too, which prevented me from even wearing a shirt on my own,” he recalls.
“I was taken to a doctor, who found my blood pressure to be in the range of 250 to 300 and gave me some medication. But on return home, my condition started worsening and I slumped on the floor, after which I was admitted to a prominent private hospital in Indore. After multiple investigations, I was diagnosed to be suffering from GBS, a rare auto-immune disorder. I was on ventilator support for the next three-four months at the ICUs of the two different hospitals, which left the savings of my middle-class family totally exhausted. My sister helped us financially,” recounted Kaneria.
The ex-soccer striker who played in tourneys at district and divisional levels returned home after four months in July 2016. “My twin daughters Siddhi-Samriddhi were afraid to see me, as I had lost around 40 kg weight. I still remember that horrific day, when calipers were put on my legs. But motivated by father and other family members, close friends and the tremendous medical and psychological support of my neurologist, Dr Amit Vyas, I ultimately left the bed and slowly started standing on my own in January 2018 after nearly 21 months,” he said.
Since then, Kaneria has inspired hundreds of GBS survivors across the country, besides in countries like the Netherlands and the US. “My sole aim in life is to educate people about GBS and help patients and survivors deal with the disease with grit and determination,” he says.
He helps GBS patients-survivors through a WhatsApp Group called ‘GBS Awareness and Help’ and a dedicated Facebook page called GBS Warrior-Jeevan Kaneria, Indore. The help ranges from counselling to medical help, physiotherapy tips to motivational sessions.
Knowing well that the injections to combat the rare disorder are expensive, Kaneria has been helping GBS patients in and around Indore in getting them at concessional rates from the wholesale market.
The GBS survivors he has been working with include over 1000 patients spread in over 23 states of the country and 10-12 of these survivors in Rajasthan, Gujarat, Jharkhand and Maharashtra are working as warriors with him in replicating his efforts with others.
One of them is Indore-based young Shubham Rathore, who in February 2022 successfully secured Junior Research Fellowship (JRF) in classical music. While he connects with GBS survivors across the country and abroad through social media platforms, Kaneria rides on a motorbike to visit survivors who live in Indore and adjoining districts like Ujjain and Dewas.
Acknowledging his commitment for the GBS survivors, the Indore district election office appointed him as an icon for spreading voter and GBS awareness ahead of the 2019 Lok Sabha polls in Indore. In December 2019, he became a member of the GBS and CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Foundation, Australia, a feat which had till then been achieved by only three other Indians based in Delhi, Mumbai and Bengaluru.
Learning from the financial problems his family had to face, Kenaria has now turned into an insurance agent, encouraging people to go for medical insurance policies. His commitment to the GBS survivors has been recognized through a series of awards.
What is Guillain-Barre Syndrome
Guillain-Barre Syndrome (GBS) is a rare disorder in which one’s body’s immune system attacks the nerves. Weakness and tingling in hands and feet are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment. Its exact cause is unknown, but two-thirds of patients report symptoms of an infection in the six weeks preceding an attack.