To Find Cure, MS Patients Willing to Help in Drug Tests
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24 May 2011
By Nisha Nambiar
Multiple Sclerosis Day
IT was a bolt from the blue for social activist Jyoti Ronghe when she was diagnosed with multiple sclerosis (MS) at the age of 36. A disease she and her family were unaware of, Ronghe had to read extensively to figure out whether she would be able to lead a normal life.
To day, though some mobility problems persist, she leads an active life.
That was the start of her discovery of the inflammatory disease that has affected 50,000 to 1 lakh Indians and around 200 Puneites. Thirteen years on, Ronghe, secretary of the Pune chapter of the Multiple Sclerosis Society of India, says though there has been not much progress in the discovery of medication for treatment of MS, patients associated with the society are "connected by hope." This is the message the Pune chapter wants to spread on May 25, where members will form a human chain at Pune club to mark Multiple Sclerosis Day on May 25.
"It is our way of reaching out to those inflicted by MS and standing by each other through this society," says Ronghe. With the organisation completing 15 years of existence, it has 123 members registered with them who are actively involved in programmes.
Rajnikant Upadhyaya, honorary secretary of the Multiple Sclerosis Society, says the objective of the body is to make patients as comfortable as possible. "From helping with some alternative medication, physiotherapy, equipment such as walkers, water beds or sticks, our society with the help of trained social workers has been involved in providing these to the patients who are not able to afford," says Upadhyaya.
The society, which has its office in Kalyani Nagar, organises fund raising programmes to generate funds for helping out the patients.
With no treatment available so far and no cause detected till now, most of the members from the Multiple Sclerosis Society have even volunteered to be tested for drugs being tried by various private companies.
Ronghe, who herself is a test subject, says she was willing for such an experiment as there is need for effective treatment of the disease. "With the disease affecting people in various ways and leaving some bedridden, the caretakers are the ones going through a lot of stress. We even reach out the caretakers and organise programmes for them," adds Upadhyaya. The Society has social workers helping them out as well as trainees who help patients with physiotherapy sessions.
Dr Ichaporia associated with the Society, advocates early detection and necessary treatment. "The Society is doing good work and reaching out to many patients affected by MS," he says.