STRUGGLING FOR SURVIVAL
Rare disorder: Will to survive keeps her going
Sonal Upreti I TNN Mumbai:
Thirty eight-year-old Misha Desai believes God comes in human forms. Battling a rare genetic disorder called myotonic dystrophy since her childhood, she says it was the doctors of KEM Hospital who gave her a new lease of life when her own relatives gave up on her.
The disorder is a chronic, slow-progressing, highly variable inherited disease that can manifest at any age. Symptoms include facial weakness and a slack jaw, drooping eyelids called ptosis and muscle wasting in the forearms and calves. It is a degenerative condition.
Misha, who weighs a mere 32 kg, finds even regular tasks like getting out of bed, lifting the phone receiver and walking, challenging. With a BA honours in English literature from Mumbai University and a Ph.D in alternative medicine, Misha now runs a telephone booth at the working women’s hostel in Kurla, where she now lives.
Her mother passed away from the same disease when Misha was only 12 years old. After her death, her father, who ran the family business of broadcasting films, took to alcohol. He passed away in 1993, leaving Misha with almost no support system.
Misha began taking treatment for her condition at KEM Hospital. There she met doctors Praveena Shah, Sangeeta Rawat and Urvashi Shah, who took her under their wing. “She has fought the disease bravely and mentally. Despite personal and financial constraints, she has survived,’’ says Dr Shah, who is a professor of neurology at KEM. The doctors even got her a job as an assistant in the department.
Duped by relatives of her inheritance, Misha had no option but to seek refuge at the Shraddhanand Women’s ashram in Matunga. Prone to fits, she became part of Samman, an epilepsy support group, where she interacted with patients and tried to help them. “The volunteers there became my friends and helped me survive a difficult phase in my life. I realised then that humanity is not dead.’’
Psychologist Carol D’souza, who helps run the group, calls her a survivor. “Misha is a strongwilled person. A lot of people can look up to her.’’ D’souza has seen her fight periods of depression and come out on top. “She is doing a good job now and even operates the computer,’’ adds Mrs Upasini, a trustee of the ashram.
Still on medication for a disorder that will weaken her muscles over time, Misha is struggling to lead a life of independence with her self-respect intact.
“I have been inspired by my family, like my aunt who has also managed to lead a relatively normal life despite health problems. The doctors at KEM helped me accept my disability.disability.”