Sickle Cell Case Study

Ade Adebisi – Skolars

Background began to hurt. I didn’t know what it was but it was constant pain. I went to hospital Ade was born and brought up in east and was there for two days.” London and attended Forest Gate Community School. Ade’s parents and Ade was soon spotted by the London family tried to stop Ade playing sport as Broncos and played for them at under-16s they were worried it would trigger a crisis and under-17s level. Because the Broncos and lead to him missing school. Ade didn’t have an under-21s side he, along started off playing football and knew little with other rising young stars Louie of rugby until a PE teacher from Bradford, McCarthy-Scarsbrook, Mike Worrincy and Andy Hurst, suggested he try Ian Lane, spent a season at Hull FC. Being at his old club, the London Skolars. Andy at clubs meant training recognised that Ade was a talented went up several notches in intensity as he athlete and encouraged him to play sport got older. It’s tough for any young athlete “If it wasn’t for Andy I would have given in let alone one with sickle cell disease. I had to the pressure from my family and not never done anything as intense as when I played sport. My mum didn’t know I was started playing rugby league. Rugby playing professional rugby for two years. league is all about being mentally and Me,my uncle and everyone kept it from physically strong and that has her because she was scared! In fact when undoubtedly helped me to deal with the I was at the Broncos I used to tell her that condition. Sometimes when I’ve played they were a football team!” rugby and it’s been a very, very intense game I’ve got to a point I’ve never Ade has always had sickle cell but it didn’t reached before and that can trigger a really affect him until he started playing sickle cell crisis.” sport at school. I was good at sport but struggled with my fitness level and As an 18-year-old Ade made his Super fatigue. Sickle cell means you can’t take in League debut for the Broncos in the last enough oxygen, an average person would game of the 2004 season against Leeds take one deep breath but a person with Rhinos at Headingley. Finding first team sickle cell disease would have to take two rugby hard to come by in the ensuing deep breaths to take in the same amount seasons at the club he opted to drop of oxygen. “Apart from the fatigue I had down a division and sign for Doncaster. In my first sickle cell crisis playing five a side 2008, Ade moved up to Whitehaven and football. I kicked the ball really hard and it had one of his best seasons, scoring 22

tries in 30 appearances and becoming the Some people have a mini crisis on a league’s top try scorer. The next season weekly basis or a crisis might last a few he picked up a few injuries but still hours, a day or several days and this managed 10 touchdowns in 19 makes it particularly challenging to appearances before deciding to come manage pain. Individuals self-medicate back to London to join his old club, the according to need and as such it can be Skolars. He has proved a prolific try scorer very difficult to keep track of pain relief. for them over the last three seasons despite his condition. ’s very tough drug- testing policy and as such on a daily basis “No one in rugby league has ever treated Ade has to complete a form to indicate all me differently or treated me as disabled the medications he has taken. As the but reactions can vary. Some coaches and amounts of drugs Ade takes varies on a fellow players who don’t know anything daily basis it makes record keeping so about sickle cell just think you’re being much harder. lazy or using it as an excuse and make jokes about being unfit which can be Ade talked about how he feels a crisis really upsetting, whereas Phil Jones at should be managed Broncos, Joe Mbu at the Skolars and John  Kear at Hull made the effort to As soon as a player feels a crisis understand sickle cell and work around it coming on they should stop and most importantly they believed in immediately take in plenty of fluids me.” and pain relief.  Help keep the player calm and Managing pain offer reassurance  An adult will be able to self- Ade says it’s hard to describe the pain, “It medicate and the appropriate is10 times worse than toothache” he drugs will be pitch side and held by suggests, while Kalpna from the Sickle Cell the team doctor or physio Society adds; “It’s like an axe constantly according to protocols around cutting into you”. Because the pain is so controlled drugs. severe the only way you can control it is  Take to hospital – the NHS by taking regular pain killers like protocol around treatment of morphine. There’s no way you can go sickle cell requires that the without some form of pain relief for a few individual be treated within 20 days or hours because the pain is so minutes of arrival at A&E. If you excruciating”. As someone with sickle cell are accompanying a player to A&E Ade knows the difference between the then make sure either you or the pain caused by a crisis and an injury or player informs the triage nurse of muscle strain and as soon as I feel a crisis their condition. coming on I have to stop immediately.

 Each individual adult will have become extremely distressed their own protocol regarding and reassurance and prompt treatment and this will be action is essential. something the player can inform  If the parents / carers are not staff as well as being in their present at training or at a medical notes. If at an away game match and you suspect a crisis and the local A & E department call an ambulance, take to does not have anyone who is a hospital urgently and inform sickle cell specialist provide them either ambulance staff or A & E with the contact details of the staff that the child has sickle individuals consultant so they can cell. Then contact the parents be contacted regarding as a matter of urgency. appropriate emergency treatment.  If parents are on site they may  On their return to training post have emergency medication crisis ensure that the coach helps they can administer and while the player to build up their training they are responding to the regime gradually and is aware that child the coach / first aider can there may be side effects from the telephone an ambulance. increased use of opiates which will  Whilst the child’s immediate create additional fatigue. needs are being taken care of it  Don’t drop a player from the team is important that another club just because they have missed a coach or staff member offers training. reassurance to the child’s team mates who may themselves be Having experienced his first crisis at distressed at the level of pain school Ade suggest how a coach they have witnessed. should respond to a child  Post crisis ensure the child is experiencing a crisis welcomed back to the team and you build up to activities  It is vital that a coach is aware slowly. Continue treating the of the child’s condition and child as a member of the team how it might manifest itself so and not just as child with sickle that if a crisis occurs they will cell be able to take prompt and  With permission from the effective action child’s family you could  If this is the first time a child organise a talk for the team has experienced a crisis they and their parents about sickle may not realise initially what is cell to help people understand happening and think they have the condition. been injured. Given the high level of pain the child might

Ade’ top tips for training and coaching that the captain can deal with any unacceptable or insensitive There are some key things that should be language or behaviour considered when supporting an athlete  Endurance or long distance with sickle cell: training is particularly challenging due to reduced oxygen intake and  Knowledge – once a coach, physio, levels therefore focus instead on team doctor, strength and short sharp fitness activities that conditioning or nutritionist of a allows for regular rest and team knows a player has sickle cell recovery. they need to make sure that they  Consider positions that focus on find out as much about the sprint ability and with less condition as possible so that they emphasis on tackling i.e. wing, full can plan a programme that will back or center. allow the individual to fulfill their  If playing professionally it can be potential whilst reducing the risk extremely beneficial to have of a crisis. Talk to the individual oxygen available on the side line to player they know their condition help recovery following intense better than anyone and if activity. necessary contact The Sickle Cell  If starting a new exercise or Society (Registered Charity No training programme it is important 1046631) for more information to find a balance between pushing  Have a positive, can do approach – yourself and not doing too much children with sickle cell often face which could lead to a crisis. a great deal of pressure from  If traveling abroad by plane with parents not to take up sport. By the team individuals with sickle adapting sessions you can safely cell should ideally inform the support a child to improve their aircraft carrier so that oxygen can fitness and enjoy the wider be provided if required. benefits of taking part in sport.  Avoid ice baths as the coldness can  Create an inclusive and respectful trigger a crisis, likewise when environment with a zero tolerance training or playing keeping the regarding bullying or `banter’ body warm is important – wearing about their level of fitness or skins or long sleeve / thermal management of pain. With the clothing under their playing strip agreement of the player you might can help reduce the risk of a crisis. want to consider educating the  Hydration is vitally important and team mates and club staff around as someone living with sickle cell sickle cell. Alternatively the player disease needs to take in more might decide to just tell the fluids than an average person. captain about their condition so

Before a training session make people going out, going for walks, and sure that the player has a bottle of running, going to the gym or trying to get fluid with them, particularly if into a team. In the past people have training in warm or hot weather. If treated it as a bad thing, but you just have playing make sure the water to be sensible and manage it. I’m proud to carrier prioritises getting water to say I’ve played rugby professionally. the player at every opportunity during the game, It is vital that all athletes consider a career  When providing nutritional advice post rugby league and for athletes such as or providing food for players make Ade this can be even more challenging sure that you are aware of the given the discrimination facing disabled dietary requirements of sickle cell people in the workplace. Fortunately for i.e. high iron content. Ade whilst at Whitehaven he met Steve Morgan, a director for BNFL at Sellafield , Future who provided invaluable career advice, guidance and support and later Ade’s brother and two sisters both have introduced Ade to Mark Dobson, owner of sickle cell disease and by joining the Sickle Wilson James where he now works. Cell Society Ade hopes he can help people with the disease, by raising awareness and I am now at a cross roads of my life and fundraising. I’m not saying, ‘do what I’ve trying to decide whether or not to done’, because what’s happened to me is continue playing or to focus on my career exceptional, I had this mental toughness with Wilson James and possibly help the at an early age because of rugby league. RFL by delivering disability awareness But sickle cell disease shouldn’t stop courses at clubs. Watch this space!