‘Epilepsy is easy to hide, difficult to disclose’

The last day of the WCNR conference hosted a two-hour session by expert panelists that spoke in detail about epilepsy, a very sad reality in this country today. The national and international experts thanked Dr Nirmal Surya for his efforts in making this conference a grand success

dr surya

One of the most lauded sessions at the 10th WCNR Conference in Renaissance Convention, Powai was on Epilepsy and dealing with it. The session had about 7 panelists and many patients who came up with their queries.

Dr Urvashi Shah, senior neuro-psychologist revealed the idea behind the public forum. “Wonderful academic programmes and huge number of delegates are present. We have included patients as well. We did as many as 9 public forums. We don’t have fancy rehabilitation in India. But, we have the NGOs who doing a wonderful work of filling the gap.” A short video on Epilepsy was followed by a short talk by Dr Surya. Carol was the convener of the session.  She thanked Dr Nirmal Surya.

Dr Nirmal Surya, founder of Epilepsy centre and a renowned name in the world for neuro rehabilitation and the president of WCNR said, “The Epilepsy foundation is run in partnership by government of Maharashtra. We organise camps. We help in providing epilepsy patients free medicines. We call patients individually and check as per the protocol and ask questions. We analyse the answers. We support, follow up and monitor patients.”

Prof Dr Sanjeev Thomas spoke about special issues on women with epilepsy. He said, “Earlier people were quiet and felt that a malady has fallen on me and I have to live with that. But, today people are coming out in open and talking about it.  Women suffer more than men. Mainly the cause is lifestyle. It affects the social life of the person.” His talk was in detail about the difficulties faced by women with epilepsy. Dr Thomas interested with the epilepsy patients who were present in large numbers.  He gave a testimony of his patients.

Speaking about marrying a person with epilepsy, he said, “People should think that they are marrying a person not a disease. So, the doctors should put a right prospective in front of the patients. Epilepsy is easy to hide, difficult to disclose.”

Dr Anura spoke about her journey with epilepsy.” I was diagnosed with partial epilepsy. I had a memory loss too. Dealing with epilepsy is complicated but not impossible. There are mechanisms to cope with it. I didn’t wanted to give up. I wrote down all. Use mechanisms which are good for you. Don’t get bogged down. Your brain is extremely powerful. Put it to use. And you will achieve your goal. Epilepsy will not come in your way as it is not a road blocker.  You will have to work hard.  So, follow your dreams and complete them.”

Alla Guekht, International League against epilepsy, Moscow Research and Clinical Centre for Neuropsychiatry Russian National Research Medical University thanked for the kind invitation.in 70% of patients epileptic drugs can decrease seizures. There is a new list of epileptic drugs. Currently, there are 20 drugs. They are not harmful. You can’t stop a medication. There are lot of other factors that can take a toll on the body.”

Panelists at the discussion
Panelists at the discussion

After which the panel discussion began. The panel consisted of Alla Guekht, International League against epilepsy, Moscow Research and Clinical Centre for Neuropsychiatry Russian National Research Medical University, Dr Sangeeta Rawat, professor and head of neurology, KEM Hospital, Dr Sanjeev Thomas, President, Indian Academy of Neurology, Professor of Neurology, Head of RMN Centre for Epilepsy and Sree Chitra Tirunal Institute for Medical Sciences and Technology (SCTIMST), Trivandrum, Dr Nirmal Surya, founder of Epilepsy centre, who is a renowned name in the world for NeuroRehabilitation and the president of WCNR, Dr Pravina Shah, Ex HOD, Department of Neurology, KEM Hospital, Mumbai, President of Samman Association, Dr Pravina Shah, Ex HOD. Department of Neurology at KEM Hospital,  B.Vengamma, Professor & Head of Neurology,SVIMS, Tirupati, Dr Urvashi Shah, senior neuro-psychologist and Dr Joy D. Desai is a consultant neurologist and DNB teacher for Neurology at the Jaslok Hospital and Research Centre.

Then, for the patients and participants, floor was opened for the questions and answers. The patients briefly discussed their queries with the experts. And a special attention was given to each and every patients and appropriate solutions and guidance was provided by the experts. Also, the experts emphasised on improving the lifestyle along with the medications.

All in all, the session was more than just a discussion. Indeed it was a heart-out dialogue between the patients, their families and the panelists.