Sneha (name changed) has just joined college. When she was in Class X, she developed a problem of balance and weakness on one side of her body. She was subsequently diagnosed with multiple sclerosis (MS).
In the case of Sophie (name changed), a middle-aged woman with a college-going son, it was around six years ago that she suddenly had a vision problem leading to double images and loss of vision. It was diagnosed as MS.
For Prakash, a middle-aged employee in a public sector company, his MS status is 12 years old. On a wheelchair now, he was earlier able to walk, take bus, ride two-wheeler, and do other routine things, according to his wife.
All the three were present at ICRTIMS - 2018, a meet on MS, here on Sunday, eager to know how their conditions could be managed better. They also found time to share their experiences with participants.
“Once a person is diagnosed with MS, he or she requires a lot of emotional support too,” said Renuka Malaker, national secretary, Multiple Sclerosis Society of India (MSSI). She was here to attend ICRTIMS - 2018. The society provides care and support to its registered members to live as comfortably as possible, helping them improve their quality of life.
Depression and anxiety grip patients when they discover their MS status, and they look at the worst possible progression of the disease on the Internet, Ms. Malaker said, adding: “Many quit jobs, as employers do not understand the reason behind the patient’s tiredness or issues like urinary incontinence or sensory or mobility problems, which make them look clumsy at work. These are the invisible disabilities.”
The aim of MSSI is to enhance awareness about the disease among medical practitioners and paramedics like physiotherapists and nurses, so that people affected by MS get diagnosed early. The medical fraternity has been saying that early detection helps manage the disease better, besides making its progression slower, but the real issue is to get it detected at the earliest, she observed.
“We have only around 2,000 neurologists in the entire country,” said Ms. Malaker. A general medical practitioner or ophthalmologist also needs to be aware about the disease, she added.
According to Ms. Malekar, there have been no epidemeological studies or surveys conducted yet to know the actual prevalence of the disease. The estimates range from 5 per lakh to 20 per lakh population. “MSSI has taken up the onus to take initiative with help from neurologists. We have also approached the government to make a registry for MS, so that every case detected gets registered. It will also help the society reach out to patients,” she added.
Besides, the society is trying to reach out to all States through disability seminars. The cost of treatment is a major issue that ranges from ₹3 lakh to ₹3 crore a year, said Ms. Malaker. The immediate good news is that several Indian drug companies have started manufacturing medicines that have brought down the cost.
MSSI is working with eight chapters across the country in Bangalore, Chennai, Delhi, Hyderabad, Indor, Kolkata, Mumbai, and Pune. Their services like counselling or therapies and activities are available on www.mssocietyindia.org
