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Bharat Sumaria – Fighting Premature Mortality In Epilepsy

Bharat Sumaria – Fighting Premature Mortality In Epilepsy



 

 

 

 

 

 

 

BY SIMON MULI

When Bharat Sumaria lost his daughter, Emily, to Sudden Unexpected Death in Epilepsy (SUDEP), he was devastated. His entire family was devastated. But what added to their anguish was their lack of awareness of the fatal condition that claimed the life of the 19-year old student at Leeds University. As he would later learn, almost half of the weekly epilepsy deaths in the UK are SUDEP and the numbers could be worse in developing countries like Kenya. This jolted him and his family into action to make sure everyone is made aware of what they should have known, help forestall premature mortality and save other families the trauma they experienced.  Off they set out on project TukTuk to Turkey, a 6000 km trip from London through 21 countries to Istanbul aboard a tiny, draughty, noisy, pink three-wheeler. The Kenyan-born SUDEP

Champion recently got to share his story with The Asian Weekly.

 

How did you know that SUDEP was the cause of your daughter death? She was sharing her house with three other students at Leeds University and they discovered her later in the afternoon when she was not answering her calls.  We didn’t know how this could have happened because there’s no physiological evidence, and even when post-mortem was done, they couldn’t find anything. So, for about three months, we tried to find out what exactly happened. Then we came to learn that she suffered Sudden Unexpected Death in Epilepsy (SUDEP). Emily had a consultant but he never warned us of the risk of SUDEP.  Unfortunately, she was just one of the 21 people who die from epilepsy in the UK every single week.  But the problem was that there was no proper data on the condition. Then we came across this charity in the UK called SUDEP Action (sudep.org). It was founded about 20 years ago by five women whose children/partners died from SUDEP. It’s a very small charity but it has worked hard to push the UK government to recognise SUDEP, and everyone, from epilepsy consultants to epilepsy nurses, to be aware of it.  Many consultants don’t tell you about the risk of SUDEP even in advanced countries like England because perhaps they don’t want to worry epilepsy patients and also because they feel it is rare. But now we’re discovering that it’s not that rare because nearly 50% of all epilepsy deaths per week are due to SUDEP. That’s part of the charity’s campaign to raise awareness to health professionals and to push for full disclosure by consultants so that epilepsy sufferers have the information to reduce their risks.

It’s one thing to be angry with your late daughters’ consultant after discovering his failure of disclosure cost her life, and another to transform that anger into a force for good. What is it about you that allowed you to do that?We were very angry and later we discovered that, under his care, two years later there was another similar death where the parents had not been warned. So, he had not learnt his lesson. After Emily had died, lots of her friends wanted to do something for her and they ran marathons or cycled thousands of kilometers to raise money for SUDEP Action, which helped us navigate our grief and showed us the positive actions the charity is taking to reduce the number of SUDEP deaths. It was then that we came up with this idea of Tuk Tuk to Turkey in December 2017.

How did you prepare for this journey through 21 countries?The journey was over 6000 km covering 21 countries to honour the 21 epilepsy deaths every week in England. It was going to take us six to seven weeks. We didn’t know how the journey would be or the route we were going to take, so we had to plan it online. And then we had to learn how to drive the tuk tuk itself and practiced for two months. It was a four-stroke petrol engine, 195cc, with a maximum speed 40 miles per hour.  But it was a terrific machine. Fortunately, I have always been going out on adventures with my friends so I was sort of used to the roughness of the trip anyway. We also learnt how to fly a drone and use a GoPro because we needed to document the trip through social media posts, blogs and other forms of media to keep people informed of what was happening, to get them engaged and connected to the trip. We also had a tiny backup car (which belonged to Emily) because the TukTuk could not carry all the luggage. So, we would drive two people in the tuktuk and two people in the backup car and we would swap. Once we were ready for the trip, we winded our way to the southern part of England, took a ferry across to France, and then in to Belgium, Netherlands, Germany, Luxembourg, Switzerland, Lichtenstein, Austria, Czech Republic, Slovakia, Hungary , Slovenia, Italy , Croatia , Bosnia and Herzegovina, Macedonia, Montenegro, Albania,  Bulgaria and finally Turkey.

Your initial plan was to raise 21, 000 pounds but you ended up raising five times that amount. What does the charity intend to do with the money?We raised it in many different ways including selling T-shirts, auctions and of course, generous donations from people. The amount raised is roughly half what SUDEP Action would raise in a year. The charity provides free counselling to traumatised bereaved families, has developed a smartphone app to keep people safe, trains clinicians, lobbies the government, runs an epilepsy death registers which will provide valuable data for future research, creates e-learning tools for health professionals and importantly raises awareness of SUDEP because lifestyle changes and taking your epilepsy medication without fail can save lives. All this can be spread wider and will help more people and hopefully reduce unnecessary avoidable deaths.

What was the most challenging part of the journey?That was probably Albania. We had absolutely no idea what the roads were like even though I had looked at Google maps.  The roads were along steep mountainsides and every 200m to 300m there was a memorial for someone who had died going over the edge. Then I lost my wife. She got out of the tuk tuk to take a photograph and I drove off thinking she was still in the tuk tuk. I discovered my mistake 10 minutes later and I got really distressed at that point. I stopped the tuk tuk and started running and screaming thinking she had fallen down into the ravine. And then I thought it might be better to go back, get the tuk tuk, turn around and drive to look for her. Suffice to say, we made it through the roads of Albania into Bulgaria

Looking back now, what would you say is your proudest moment of the TukTuk to Turkey trip?My proudest moment is actually finishing the journey. My Kenyan family surprised me and were there at the finish. It took just over six weeks and we were so proud that we could do something in Emily’s memory. It brought such immense joy to us and it was also a very emotional moment. We were crying and wished she could have been there. The irony is that we wouldn’t have done it if she hadn’t died. We were also happy that the funds we raised would go a long way in supporting the noble activities of SUDEP Action. But even more important is the awareness we helped create. This article will hopefully provide the same awareness in Kenya and get authorities and health professionals to hasten to address the plight of people with epilepsy. We hope our message through our journey gets through!

So where is the tuk tuk now?We have it with us. We were given the option to give it back to the dealer who lent it to us or buy it. We decided to buy it and keep it forever as it has become part of the family. I do drive it occasionally and it still raises smiles and awareness of course.

Tuk tuk to Turkey was nominated for Fundraising Team of the Year for 2019. Tell us more about that?About 50,000 fundraisers were put forward for a Justgiving Award this year and we got down to the last three. We were invited to their award ceremony in London in October. We were proud to be part of such an event which was full of inspiring people trying to make a difference.

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