“EKATWAM” began operation on 1st Feb 2014 & thanks to the support of our donors, we have been able to accomplish the following in the last 7 years –
- Setup EKATWAM Medicine Bank to provide free medicines to poor patients. Since these patients could not afford the medicines, they would not take them regularly and hence there was little improvement in their condition.
More than 200 such patients are being provided free medicines on an ongoing basis throughout the year. This includes 75 mentally challenged orphan boys. Most of them have now reported marked improvement in their condition, with some being seizure free since the time we started providing them free medicines and they started taking them regularly.
- For some patients with intractable epilepsy, surgery could be a life changing procedure. In most cases, the patient is seizure free after surgery. However, it costs Rs 25,000 – 30,000 at AIIMS (Rs 4 – 4.5 lacs in a private hospital) and many patients cannot afford the same.
Hence, EKATWAM gave 17 such patients financial assistance for free surgeries in the last 7 years. Most of these patients are seizure free now and leading a near normal life. While we wished to help many more needy patients, we had to restrict the number due to limited resources.
- As you are aware that it is very difficult to get an appointment with doctors at a premium institution like AIIMS. EKATWAM could assist over 150 patients to get access to treatment at AIIMS in the last 7 years. Many of these patients have reported improvement in the frequency of their seizures.
- National Brain Research Centre (NBRC) is situated at the extreme end of Manesar (55 kms from AIIMS) and nearly 2 kms off the main highway. Patients need to go there to get MEG (Magnetoencephalography) test done. MEG is a functional neuroimaging technique for mapping brain activity by recording magnetic fields produced by electrical currents occurring naturally in the brain, using very sensitive magnetometers. It greatly helps to localize the Epileptogenic focus – a group of dysfunctional neurons generating epileptic activity in the brain. Thus, it offers patients a very good opportunity for a cure following surgical removal of the now localised epileptogenic area.
Since there is no direct public transport available from Delhi to NBRC, patients and their care givers were finding it very difficult to reach there. Hence, EKATWAM started free transport service from AIIMS to NBRC & back for patients who were required to get the MEG test done. The service was appreciated a lot by the patients and their care givers. However, we had to discontinue the same after a year due to resource constraint and other reasons.
- Persons with Epilepsy face discrimination & harassment at places of education, work or in a marriage. The stigma associated with epilepsy makes the affected persons and their families hide the disorder and avoid treatment.
Many superstitions & myths continue to be attached to epilepsy even in these modern times e.g. Epilepsy is caused by spirits entering a person and need to be treated by witchcraft / Persons with epilepsy are lunatic / When a person has a seizure he should be made to smell a shoe / Persons with epilepsy cannot lead a normal life etc. This is obviously due to lack of awareness and education about the disorder.
To tackle this issue, EKATWAM has organised many events to create awareness about Epilepsy in the last 7 years. These events have got wide publicity in print and electronic media.
- It is a well-known fact that children living with seizures often feel isolated. They have very few friends and feel different from their peers. Care givers also feel stressed out coping with the disorder of their wards. In this scenario, Support Groups provide Persons with Epilepsy and their Care Givers a chance to meet others struggling with similar issues, to make friends and to gain from the experience of others. EKATWAM understood the importance of support group meetings and organised many such meetings & get-togethers for Persons with Epilepsy & their care givers in the last 7 years. Those attending these meetings are like a close-knit family now.
- One of EKATWAM’S major objectives is to spread awareness about Epilepsy, in order to eliminate the associated stigma, remove superstitions and myths attached to Epilepsy. However, when popular TV shows like “Comedy Nights with Kapil” ridicule people suffering with Epilepsy by making jokes about seizures in 2013 & 2014, we need to do something about it. Hence, EKATWAM filed a complaint with the Broadcasting Content Complaints Council against “Comedy Nights with Kapil” for ridiculing people suffering with Epilepsy by making jokes about seizures, not once but thrice. As a result, the show was cautioned by BCCC and did not repeat the act again, as long as it lasted.
- Epilepsy happens to be one of the most complicated and intriguing brain disorders, a fascinating research field. To attract young minds who are fascinated by or wish to pursue a career in neurosciences, EKATWAM partnered with SGTB Khalsa College to organise EpiCon 2014, International Conference on Epilepsy. Eminent speakers like Dr Raman Sankar, Chief of Paediatric Neurology, University of California, Los Angeles and Dr Athanasios Covanis, President, International Bureau of Epilepsy took part in this conference. The conference was attended by over 500 undergraduate, post-graduate and research students of Delhi University, Counsellors & Special Educators of Schools, Persons with Epilepsy & their Care Givers. We were hoping to make it an annual event but could not due to resource constraint.
- “EpiReach” (Epilepsy Outreach Program) was our big initiative for 2016. Under this initiative, we partnered with SGTB Khalsa College, a premier college of University of Delhi, and doctors from AIIMS to spread awareness and provide treatment at the doorsteps of the patients. 6 camps were organised in 2016 across Delhi NCR near slums and lower middle class residential colonies. 131 patients were given 1 month’s free medicines at these 6camps. The 7th one was organised in Tihar Jail for the inmates and jail staff.
- The Commonwealth Cultural Forum (Founded by Ms Shivani Wazir Pasrich, Governing Body Member of EKATWAM) organised the inaugural Commonwealth Cricket Cup in Mar 2018 for raising awareness about epilepsy. The 10 overs a side match was played at the National Stadium, Delhi between “The Commonwealth Cultural Forum” team comprising of Ambassadors & High Commissioners of Commonwealth countries and the “The Indian Legends” team comprising of Kartik Murali, Atul Wassan, Kirti Azad, Tilak Raj, Gursharan Singh, Dronacharya Awardees Gurcharan Singh & Raj Kumar Sharma and others.
India’s # 1 cricketer & youth icon, Virat Kohli sent a message on this occasion supporting our efforts around creating awareness about the disorder. Do watch the videos, if you haven’t already:
English Version – https://www.youtube.com/watch?v=UCfSj5bfAwA&t=1s
Hindi Version – https://www.youtube.com/watch?v=vQ286CAHKzQ&t=1s
Commonwealth Cricket Cup 2019 was held in Hong Kong and the 2020 edition was planned to be organised in Delhi in Mar 2020, but had to be called off due to the pandemic.
- On 1st April 2020 the whole world was in a lockdown due to the Coronavirus. While we stayed indoors, Doctors & Medical Staff were at the hospitals 24 x 7, attending to the ever-increasing number of Corona positive patients. This situation presented EKATWAM a new opportunity……to support the Corona Warriors with lifesaving protective equipment and gear. Thanks to the overwhelming support of our donors and the efforts of Dr P Sarat Chandra, we were able to provide the Department of Neurology, Department of Neurosurgery and Trauma Centre at AIIMS Delhi the following protective equipment –
- 1,000 PPE Kits
- 1,000 Disposable Gowns
- 3,000 N95 Masks
- 10,000 3 Ply Masks
- 12,000 Disposable Caps
- 50 Cans (5 Litre each) of Hand Sanitizer
- Another 800 PPE Kits were provided free of cost by a donor
- 250 Black & Decker Goggles
- 130 3M Half Face Masks with P100 Filters
- 20 Corona Ovens (40 Litre capacity) for sanitizing equipment etc using UVC Light.
- 3 ServoTech RoboTruks, for sanitizing wards, OTs etc using UVC Light
- 3 Corona Wardrobes, for sanitizing PPE, Clothing etc using UVC Light
- 20 Patient Care Kits.
- On account of the lockdown and travel restrictions from April to Oct 2020, we were not able to dispense medicines to the patients we were supporting. In Nov 2020 we called each and every patient and asked them to collect medicines. Quite a few outstation patients were sent the same through courier. 6 months medicines were given to every patient who could collect the same or whose medicines could be couriered.