The story of Malayali IT professional who fought a rare disease for 3 years

TJ Sreejith


Kochi: The doctor who initially treated me once said he would not be accountable if I died while undergoing treatment at home, reveals Archana Nair, seated beside her five-year-old daughter and husband Sajeev at their house in Kakkanad.

Archana, who worked in an IT company in Bengaluru for 14 years, was diagnosed with a rare disease called Myasthenia Gravis, a chronic autoimmune and neuromuscular disease that causes weakness in the skeletal muscles when she started her new life in Kochi three years ago.

She resided in a flat in Kakkanad and worked for a company in Infopark. Unfortunately, her life turned upside down when she experienced a loss of eyesight while driving one day. Subsequent tests revealed no issues with eyesight. However, the doctor noticed she had drooping eyelids.

Though the doctor recommended seeing a neurologist, she remained hesitant to visit the hospital during the 2020 Covid pandemic. By that time, she lost control over her left eyelid and it was completely shut.

Following this, several tests were conducted, and doctors found she was suffering from a rare disease called Myasthenia Gravis. The disease could be only controlled using medicines, Plasma therapy, and Steroids.

Soon she was hospitalised, and her condition weakened. She struggled to chew food and was unable to raise her head. Further, breathlessness was another issue which slowly affected the lungs.

Unable to find relief, the family started to rely on medicines, which included injections that costs Rs 7 lakh per dose. However, its effectiveness only lasted a few weeks. Further, the use of steroids resulted in Glaucoma.

In May 2022, she again started to feel the effects of the disease and struggled to breathe. Tests revealed a tumour in Thalamus Gland. She went through a complicated surgery slated to be very dangerous for those diagnosed with Myasthenia Gravis. It took three days before she woke up after the surgery. However, the tumour returned, and the doctors were forced to rely on radiation and chemotherapy.

She recalled those days when she wished her life could end. However, she fought her way back to life and slowly recovered.

By November, she was able to chew food. During the three years of pain, she recalls how her husband and her daughter helped to overcome the disease.

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