Did You Know Epilepsy Is A Broad Diagnosis?

first_img[ Close ] Helping your doctor to uncover a more specific diagnosis can make a difference. You’ll know what you’re up against, what to expect in the future, and what treatment options may end up working well.However, there are challenges to finding a specific diagnosis. No two people living with specific epilepsy syndromes have the same initial signs and symptoms. Also, signs and symptoms can change over time, confounding diagnosis. For example, up to 3 out of 4 people with a rare and severe form of epilepsy may no longer have the same seizure types as when the seizures first started.1  Misdiagnosis and under-recognition are common problems for rare and severe epilepsies, including Lennox-Gastaut syndrome (LGS), Dravet syndrome and Tuberous Sclerosis Complex (TSC). In one study, nearly 30% of patients with LGS were previously misdiagnosed.2 In another study, the time from onset to an accurate diagnosis of Dravet syndrome was ≈4.8 years.3Here are four reasons why a specific diagnosis could make a real difference for people living with refractory epilepsy:1. You’ll know what you’re up against.It’s fairly common for people to reach adulthood before receiving a specific diagnosis. But knowing earlier could mean all the difference—it can unlock treatment options, access to foundations and grants or financial assistance, connect you with a supportive community of others who can share their experience, and much more.One of the benefits of finding your specific diagnosis is the opportunity to connect with advocacy groups. They are a community of support that brings families together to share advice, support, participate in events, learn about grant opportunities, or simply feel at ease in each other’s presence. For many, finding their support group made a world of difference.2. You’ll get to connect with a community of people who understand exactly what you’re going through.If you learn that you or your loved one is living with LGS, Dravet and TSC there are many resources available where you can find invaluable information, take advantage of support programs, and have opportunities to connect with others with similar experiences. See how one mother looked to her community for information. “Lili was 6 months old when she was diagnosed with seizures. She was first diagnosed with infantile spasms syndrome, and then it was around the age of 3 or 4 that it transitioned into LGS… Close to her turning 6 months old and all of a sudden I remember like we would go into her crib and we would be like hi Lili, and she would make this jumping movement… And so we called the pediatrician, and it’s ironic now because we remember saying to him… “She’s doing this weird behavior where it’s almost like a seizure and she’s like jumping and she’s doing it several times and we don’t know what it is.”We sort of always thought, well, she’s going to grow out of this, or it’s going to get better, or the next medication we try is going to just stop all of these seizures… There was such little information.There’s nothing wrong with getting a second opinion and seeking out other doctors. I think the research component and doctors who are on sort of a cutting edge of different treatments and willing to try other treatments and have experience trying other treatments, is important.” -Natalie, Lili’s mom3. You’ll get information about clinical trials and treatments that might helpHaving a specific diagnosis can open the door to treatment options that may help, and help your doctor identify new treatment options. Without a specific diagnosis, a tailored treatment can be challenging.2,5 Treatment plans and management can be personalized to particular conditions.2,34. You’ll know more information to help you prepare for what may happen in the futureMany families advocate for a specific diagnosis in order to get access to the best possible treatment plan, additional resources, and a community of support. Finding a specific diagnosis is possible—and it starts with filling in the gaps before you talk to your doctor.Talk to Your DoctorLiving with uncontrolled seizures can be scary, and seizures often vary from person to person—that’s why it’s so important to know what to tell your doctor to help fill in the gaps that may lead to a more specific diagnosis. This assessment was created based on extensive research to help you and your doctor begin the conversation and gain valuable insights toward finding a more specific diagnosis or simply learning more about what may be behind the uncontrolled seizures.References 1. Kerr M, Kluger G, Philip, S. Evolution and management of Lennox-Gastaut syndrome through adolescence and into adulthood: are seizures always the primary issue? Epileptic Disord 2011; 13 (Suppl. 1): S15-S26. 2. Bourgeois B, Douglass L, Sankan R. Lennox-Gastaut syndrome: A consensus approach to differential diagnosis. Epilepsia, 55 (Suppl. 4):4–9, 2014 doi:10.1111/epi.125673. Wirrell EC, Laux L, Donner E, et al. Optimizing diagnosis and management of Dravet syndrome: recommendations from a North American Consensus Panel. Pediatr Neurol. 2017;68:18-34. 4. Arzimanoglou A, Resnick T. All children who experience epileptic falls do not necessarily have Lennox-Gastaut syndrome…but many do. Epileptic Disord. 2011; (suppl 1):S3-S13.5. Piña-Garza JE, Boyce D, Tworek DM, et al. The refractory epilepsy screening tool for Lennox-Gastaut syndrome (REST-LGS). Epilepsy Behav. 2019;90:148-153.last_img read more

Questlove Was On The Sesame Street Float In The Thanksgiving Day Parade

first_img Now that story is something we can all be thankful for. When The Roots drummer Questlove was growing up, he wanted to work for Soul Train and Sesame Street. It seems his wish came true today, as Quest was hanging out with the Sesame Street crew at the Thanksgiving Day Parade!Check out Questlove’s Instagram posts:last_img

Bad weather calls off NASA-SpaceX launch

first_imgSource: NASA/Joel KowskyNASA said the countdown proceeded smoothly throughout the day yesterday, with no technical issues raised regarding the SpaceX Falcon 9 rocket or the Crew Dragon spacecraft.But later in the day with operations underway to load the rocket’s propellants and the instantaneous launch window of 4:33 p.m. EDT drawing near, launch weather officials briefed SpaceX Launch Director Mike Taylor that there just wasn’t enough time to wait for weather to improve.Rain, cumulus clouds, attached anvil clouds, lightning and field mill data – which measure the amount of electricity in the atmosphere – all violated Falcon 9 and Crew Dragon launch criteria at times throughout the day.“There was a concern that if we did launch, it could actually trigger lightning,” Bridenstine said. “We made the right decision.”The Demo-2 mission, dubbed Launch America, has been postponed until 3.22pm EDT on Saturday (30th May). American astronauts Doug Hurley and Bob Behnken were due to liftoff from Launch Complex 39A at NASA’s Kennedy Space Center in Florida at 4.33pm EDT, but bad weather forced mission managers to pull the plug just 16 minutes before launch.“I know there’s a lot of disappointment today. The weather got us,” NASA Administrator Jim Bridenstine said. “But it was a great day for NASA. It was a great day for SpaceX. Our teams worked together in a really impressive way, making good decisions all along.”last_img read more

A home success on two fronts

first_imgStephen Beard, left, and Barry Winton, right, from the winning team, pose with their trophies.As the day progressed the skies remained overcast with a slight wind ensuring everyone had a great day’s golf whether they were among the prize winners or not.With a maximum of five tee shots for each team member the system allowed all levels to compete in what is designed primarily to be a fun tournament which everyone can join and enjoy with the real winners being the charity.The standard of scoring was again exceptionally high with all the teams finishing within five shots of each other and indeed the top nine teams covered but just three shots with the top three teams all shooting a gross 66 and the winners, second place and third being determined by the handicaps received.  The winning score was just 0.1 higher than that of last year’s event.Whilst golf was the main attraction of the earlier part of the day, the concept was to use the tournament to focus on the raising of funds for the children of the Bann Jing Jai Orphanage which has some 80 children under its care and exists solely on the good will and donations of private individuals and charitable donations from organizations throughout the year.  This event was organized to raise funds to go towards the construction of a new home, for approximately 100 children, to be built on over four rai of land on the outskirts of Pattaya, the land already having been purchased for that purpose.Runner-up team, Lars Nedrelid, Anders Hansson, Tom Novak and Colin James.More information can be found on the website www. baanjingjaifoundation.org.Whilst there was not a hard and fast target for the day it had been hoped, having regard that the event was to be held in the middle of the low season, that somewhere around a hundred thousand baht could be raised.  In the event this figure was exceeded.Prior to the presentations there were special thanks to some of those who had assisted in setting up and organizing the day and or sold tickets for the lucky draw.  These included Len Jones and Russell Exley on the golfing side and Jim Farmer and Jeff Stone who between them sold a large number of tickets for the prize draw, together with collecting many donations and to all those who donated in any way whatsoever to the cause.Third placed team Grant Cadell, Noi Emerson and Tony Barritt (Al Keith not in picture).Following the draw for the 50/50 prizes the final total for the day was revealed as THB 105,000.The total raised for the Baan Jing Jai New Home Appeal was made up as follows: Golfing activities of the day 22,000 baht; 50/50 Draw 42,000 baht; Donations 31,000 baht; Special Donation 10,000 baht.Whilst not wishing to exclude and also not mentioning any individual, many who gave very generously either through the 50/50 draw or directly into the fund with donation, it is right to give credit to those commercial sponsors who helped to make this such a successful day; these were Phoenix Golf and Country Club, The Pattaya Mail, The Links Golf Bar, The Pattaya Sports Supply and The Haven Hotel.A happy Bling, left, – the 50/50 draw winner.Results1st Barry Winton, Graham Davis, Stephen Beard, Orathai Winton (8.0) Net 58.02nd Lars Nedrelid, Anders Hansson, Tom Novak, Colin James (7.5) Net 58.53rd Al Keith, Grant Cadell, Noi Emerson, Tony Barritt (6.4) Net 59.64th Peter Masters, Joe Niisato, Jean More, Jeff Cohen (8.9) Net 60.15th Don Everett, Terry Hodgkiss, Max Allan, Mike Armstrong, (8.9) Net 61.150/50 Draw Winners1st Bling Suree2nd Lamyai Beard3rd Sean Connolly The competition got away exactly on time and the rounds proceeded at a brisk pace, considering the four person scramble format, with the last teams round being completed in less than four and a half hours. Baan Jin Jai Summer Scramble 2012The second Baan Jing Jai Summer Scramble event in aid of the New Home Building Fund was played over the Mountain and Ocean Course at Phoenix Golf and Country Club on Friday, July 6, after the management had offered to assist the cause, and with the weather holding off having threatened to rain for most of the day, it was a fine day to play golf with the added knowledge that it was all in a good cause.last_img read more

Virat Kohli remains on top as the highest earning athlete in India

first_imgAdvertisement co1geNBA Finals | Brooklyn Vs5tqrkxWingsuit rodeo📽Sindre Eb( IG: @_aubreyfisher @imraino ) v2xhoxWould you ever consider trying this?😱2kqCan your students do this? 🌚t8coRoller skating! Powered by Firework Every year Forbes released its list of highest-earning athletes in India and around the world. This year the list is topped by Virat Kohli who made a staggering Rs 228.09 crore over the period of a year starting October 1, 2017, to September 30, 2018.Advertisement The BCCI central contract, Royal Challengers Bangalore salary and advertising contracts are among the major contributors to Kohli’s earnings. He is ranked at No. 3 in overall celebrity ranking with Salman Khan taking the top spot with a whopping sum of Rs 253.25 crores.Advertisement Virat Kohli’s earning is pretty impressive considering he has managed to almost double his earning in a span of one year. Last year his earnings were Rs 100.72 crore.This just shows that Virat Kohli is not only a very good cricketer but also one of the most marketable athletes on the planet.Advertisement According to data from Sporting Nation in the Making V, a report examining sports sponsorships in the country in the previous year, Kohli is currently endorsing a whopping 19 brands with an endorsement value of around Rs 150 crore. His contract with BCCI also gets him ₹7 crore per year and his IPL team Royal Challengers Bangalore spent a whopping Rs 17 crore to keep him on their side.Also Read-Cricket: Virat Kohli promises to be ‘sledge-free’ in Australia; Mitchell Johnson isn’t buying it   Advertisementlast_img read more

Left gutted

first_imgBy DANIELLE GALVIN CORA Lynn Football Club has rallied behind four players who lost their home but escaped with their…[To read the rest of this story Subscribe or Login to the Gazette Access Pass] Thanks for reading the Pakenham Berwick Gazette. Subscribe or Login to read the rest of this content with the Gazette Digital Access Pass subscription.last_img

Ring of reality disturbs this bliss

first_imgBy ANEEKA SIMONIS A WEDNESDAY afternoon of wellness was quickly cut short during an outdoor yoga session held at the…[To read the rest of this story Subscribe or Login to the Gazette Access Pass] Thanks for reading the Pakenham Berwick Gazette. Subscribe or Login to read the rest of this content with the Gazette Digital Access Pass subscription.last_img

Shortlist shot at Premier’s award

first_imgBy Kyra Gillespie A Beaconsfield dental clinic and a Phillip Island nature campaign have been shortlisted as finalists in the 2018 Victorian Premier’s…[To read the rest of this story Subscribe or Login to the Gazette Access Pass] Thanks for reading the Pakenham Berwick Gazette. Subscribe or Login to read the rest of this content with the Gazette Digital Access Pass subscription.last_img

Magpies fan banned for three years after shaking penis at Spurs fans

first_imgNEWCASTLE fan Keith Steinmetz has been given a three-year stadium ban after ‘shaking his penis’ at Tottenham supporters during their clash last season.The youth football coach dropped his pants and flashed Spurs fans for five to ten seconds during the Wembley encounter between the two sides on May 9.2 Newcastle supporter Keith Steinmetz has been banned from attending football games for three yearsCredit: PA:Empics SportSteinmetz, 58, has also been given a six-month community order and fined £600 for his actions in London.The grandad had reacted to goading from Spurs fans, as well as verbal abuse, but his retaliation quickly backfired.He subsequently pleaded guilty at North Tyneside Magistrates’ Court in June to one count of exposure and a public order offence.But according to Chronicle Live, the case was adjourned until this week after the prosecution applied for a banning order on Steinmetz attending football games.2 Harry Kane netted the only goal of the game when the two sides faced each other in MayCredit: REUTERSProsecutor Brian Payne told the court: “This case involves the deliberate exposure of the defendant’s penis at the opposing fans at Wembley Stadium. He’s a Newcastle fan.“He was fairly rapidly detained and subsequently interviewed. He was asked how much he had to drink and he said he’d drank between six and seven pints between 4pm and 9pm.”Steinmetz – a Magpies season ticket holder – was reported to the FA following the incident, but solicitor Jonathan Stirland told the court he had reacted badly in a “moment of sheer stupidity”.He said: “He’s gutted, disappointed, angry and embarrassed with himself.MOST READ IN FOOTBALLRETRACING STEPSJack Charlton’s granddaughter Emma Wilkinson ‘would love’ to visit IrelandROY RAGEFurious Roy Keane launched foul-mouthed rant at Pique over Fabregas friendshipPicturedTOP FORMBrazil icon Ronaldo soaks up sun with partner Celina Locks on yacht in FormenteraPicturedON THE PAOLPaolo Maldini shows off shredded physique at 52 while on holiday with wifeLive BlogUNITED LATESTMan Utd transfer news LIVE: All the gossip and updates from Old TraffordExclusiveLOCK CLOWNPaul Scholes flouts local lockdown rules by throwing huge 7-hour birthday bash”He’s not someone who is a risk of violence in the future. This is a one-off in relation to disorder.“He will be a church mouse when he goes to matches in the future. He will ensure he won’t drink at all and ignore any goading.”Newcastle fans protest Mike Ashley outside Sports Directlast_img read more

IPTL may have just struck upon an audacious formula as it takes tennis to newer audiences

first_imgRoger Federer (left) and Sania Mirza during their mixed doubles match of the IPTL league in delhi.It was a rally that lasted 16 shots. Each laden with power, precision and sublime skill and each cheered lustily by a 15,000-strong raucous crowd at the Indira Gandhi Stadium in Delhi. The world’s,Roger Federer (left) and Sania Mirza during their mixed doubles match of the IPTL league in delhi.It was a rally that lasted 16 shots. Each laden with power, precision and sublime skill and each cheered lustily by a 15,000-strong raucous crowd at the Indira Gandhi Stadium in Delhi. The world’s two best sporting gladiators, Roger Federer and Novak Djokovic, were doing everything to enthral and entertain, to compete and win. It was competitiveness of the very highest pedigree, rubbishing all scorn that the International Premier Tennis League (IPTL) is no more than exhibition tennis masquerading as a league. That not a soul had moved till 11.20 p.m. braving the chill outside was proof that the IPTL, world tennis’ newest kid on the block, is here to stay.Laden with innovation and backed by broadcast and corporate support from the likes of Star and Coca-Cola, the inaugural season has been a success by every yardstick. But can it be sustained and can the league be made economically viable in the long term? Can team owners who are likely to have paid $4-5 million as licensing fee to own a franchise expect to get their money back? Are players’ salaries, estimated to be a total of $ 15-million plus, justified? Finally, can Mahesh Bhupathi and his team well and truly ‘break the code’? For the longest time tennis has remained immune to change. While embracing baseline technology and other such technical advancement, the very kernel of the sport has remained unchanged. Most matches continue to be played for five or three sets, Davis Cup encounters are still played over three days, the number of games won by players has little consequence in the larger scheme of things and there is never a time limit to how long a match can continue. A Grand Slam semi-final can get over in under an hour or continue for five hours or more.advertisementThe IPTL has changed all of this. By making each match a single-set affair, the well thought-out spectacle has ensured that five matches are completed in three hours or so, allowing broadcasters to plan television schedules to perfection. Speaking on the innovation, Mahesh Bhupathi, the prime mover behind the league, says, “Ours is the only sport where we can’t put a time quotient to a match. A Wimbledon semi-final can get over in an hour and it can also go on for five-and-a-half hours. Even in cricket you can put a time cap. For all our broadcasters, Sky in the UK, Singtel in Singapore, ESPN in Brazil, Star in India we have been able to put a time cap for matches. What we have done is put a shot clock inside the courts- there can’t be more than a 20 second gap between points. The moment a point is over, the shot clock will start to tick. It should make the game faster and more interesting.”While the naysayers will always have some words to say, there’s little doubt that team tennis in the form of the Davis Cup is commercially difficult to sustain. Spread over three days, it doesn’t give much to the broadcaster or the sponsor. In contrast, the IPTL offers its partners a viable package. With the very best in action, the broadcaster is assured of eyeballs and the sponsor of packed stadiums.By getting some of the biggest names associated with the modern game on his roster, Bhupathi has already won the first set. “We never intended it to be a challenge to the circuit. The Grand Slams will forever remain the pinnacle of our sport. But just like in cricket, in tennis too both formats can co-exist,” says a confident Bhupathi at the end of the Delhi leg of the league.Clearly the biggest coup for the IPTL has been the signing of Roger Federer. At some level, Federer is bigger than the sport itself. He is associated with everything that is good about tennis-competitive but never ultra-aggressive and perhaps the most complete player ever. Federer committing to the concept has been a huge point won. And for Indian fans to be able to watch Federer play Djokovic in Delhi was a real bonanza for a few thousand rupees. Never had these two legends played in India and in that sense Delhi’s signature match-up was a real toast for sports fans.Speaking on the concept and if he thinks it can be sustained in the long term, Federer emphasises the importance of getting the best players to Asia. “You don’t always get the world’s best players to play in these parts of the world. By taking the league to Manila, Singapore, Delhi and Dubai, the IPTL has opened up new constituencies for tennis. It is always important to increase the fan base for the sport and this I think is an important task accomplished,” said Federer.advertisementDjokovic, his arch rival and the current world number one and who was earliest among the mega icons to commit to the league, agrees. “Mahesh had approached me a year-and-a-half back and I immediately sensed the potential of the format. For example, I had never come to India. It is because of the IPTL that I could come to Delhi and play here. People loved the tennis and there’s no doubt the support base will only continue to grow in the years to come.” While the players have loved the experience, sceptics have questioned the economics of the league. The moot question is, can the owners of the four franchises ever aspire to make a profit? Bhupathi is cautiously optimistic. “Some teams will break even in three years and others in five. The response has been tremendous and we are already planning to increase the number of teams to eight by 2020. Just check the corporates who have come on board and you will realise that each of them believes in the concept.”Sunil Gavaskar, the co-owner of Singapore Slammers, suggests that by ensuring every team has an equal chance, the organisers have ensured that IPTL is a level playing field, which in the long term is expected to help its economics. “When the opportunity arose to buy a stake into an IPTL team, I was very excited by the idea. It is a terrific concept, is a unique format where every team has an equal chance, and it will surely catch on with fans who will be getting a great opportunity to seeing the very best of tennis in action. With every match being a set each, there are no favourites for a start. The top players are able to make a comeback in Grand Slams even if they lose a set but here with a set being the decider, it will always be a very open competition.” While the tournament may not have been won yet, there’s no doubt that the IPTL is already two sets up in a fiveset final.Boria Majumdar is consulting editor (sports), India Today GroupTo read more, get your copy of India Today here.last_img read more