Helping pupils with JHS and EDS stay physically active
Being physically fit and participating in physical activity and sport is an important part of a pupil’s development. Pupils with JHS and EDS are encouraged to participate in appropriate physical activity and sport, in order to facilitate their physical development and specifically to help keep their joints in place and to improve their coordination, muscle strength, stamina and confidence.
While there is an element of risk for everyone participating in sport, some are inherently more risky than others and contact sports should be avoided at all times for pupils with vascular EDS (vEDS) or classical EDS (cEDS) as the risk of trauma is too high and potentially life-threatening for those with vEDS.
Pupils may be advised not to participate in contact sports, but, if determined to do so, the risks can be minimised by maximising strength, agility, stamina and optimising technique. Everyone involved in working with young people and sport needs to be aware of the issues relating to hypermobility even if not problematic at the time and to consider ways to minimise risks in order to prevent injury, prepare them for sport, to optimise performance and/or to facilitate optimal recovery through appropriate rehabilitation.
In terms of exercise and sport, what each pupil can cope with will vary hugely and this should be respected. Some pupils may be more at risk of ligament sprains, joint subluxations (partial dislocations) and dislocations because of joint laxity, poor proprioception and coordination and the fragility of their ligaments and tendons. Sometimes minor injuries can lead to more serious ones like micro-tears in the muscle. This, however, does not mean that a pupil should not participate in sport. It means that, unless a doctor or physiotherapist tells them not to do PE, then common sense should prevail, the risks should be minimised and, where applicable, weighed up against the benefits. Sometimes just providing an alternative PE programme, or fitness activity can be the most pragmatic thing to suggest.
If a pupil with hEDS or JHS is fit and has good control of their joints, their flexibility and their extra mobility may be an advantage. Ensuring a pupil doesn’t stretch hypermobile joints further, or rest at the extremes of their range of movement, can help reduce problems as they get older If, however, a child is struggling with painful joints, subluxations, dislocations, or fatigue, a revised programme incorporating sports and physical activities which involve less risk is recommended. Additionally, the inclusion of rest breaks, the use of appropriate splints and strapping, and allowing sufficient time for delayed recovery from injury, may be required.
Some sports and performance activities may be more of an injury risk than others, particularly contact sports and where sharp cutting, acceleration, deceleration, and change of directions are involved. Decisions with regard to participation may need to be made in discussion with the family, physiotherapist, and/or physician as to whether sports are too much of a risk and/or what adjustments need to be made.
Some young people with EDS or JHS can become deconditioned. Where this is the case, it is important to commence physical activity at a low level and to build up their stamina and strength gradually, allowing time to rest and recover.
Avoid activities involving heavy weights or intense muscular exertion such as doing pull-ups or carrying heavy rucksacks. Encouraging a pupil to find a sport or activity they enjoy, or would like to try, which doesn’t cause undue stress to the joints, can be a successful way of encouraging participation.
Focusing on activities that promote control of movement, coordination, graduated strengthening of muscles, stability of joints and careful cardiovascular fitness is helpful to pupils. Some may be able to better tolerate sports such as swimming, gymnastics, and cycling, usually on a non-competitive basis (unless a pupil really wants to try and compete).
Give hands-on assistance and/or demonstrations to model the movements required. The use of mirrors to aid proprioception may help some pupils better understand body positioning and experience required movements.
Monitor the pupil’s level of exertion more closely in extreme weather conditions because heat and cold may affect their autonomic (involuntary) nervous system and their endurance and exertion level.
Allow pupils to wear protective gear to increase mechanical support and proprioception. These could be braces, strapping, or supports prescribed by the pupil’s consultant or physiotherapist.
Allow the pupil rest breaks in order to extend the overall length of participation and allow sufficient time for gradual warm-up and cool-down. Little and often is better than a full-out session.
Be receptive to a pupil who does report certain symptoms, such as joint pain and fatigue. Be aware that symptoms and their severity can change significantly from one day to the next in those with JHS and EDS. A pupil may seem able to do an activity with little problem one day and then struggle greatly with it the next. If a pupil does get injured, it needs to be remembered that rehabilitation following injury may take longer in some individuals with JHS or EDS due to slower healing times and reduced proprioception.
Remember that the pupil may be doing prescribed physiotherapy outside of school hours. Parents may be able to ask their child’s physiotherapist to liaise with the school when appropriate exercise plans are being devised
If a pupil refuses all activity, it is recommended that a specialist is sought who is able to compile an activity strategy that promotes enough confidence and trust to override fear avoidance. If the child has experienced significant bouts of injury, pain and/or sedentary periods, cognitive behavioural tools (or other types of therapy) may help overcome fear avoidance. Active listening and compassionate communication are critical to re-establishing trust.
Passion and motivation to do an activity/sport is often the key for pupils to gain confidence and take part in the activity.
Some pupils will be stiff during a growth spurt and then hypermobile on the other side of the growth spurt. Their ligaments may be loose but their muscles are stiff – so flexibility can change on an individual basis and over time.
Growth spurts and strength spurts are different. A pupil may be able to jump high but not have the strength to support the movement lending themselves to injury.
Poor balance and poor coordination can be part of the conditions. While dyspraxic pupils may be hypermobile it is the sensory receptors throughout the body which don’t pick up as much information about where body parts are in relation to the space around them. So these pupils have less accurate sensory input for the brain to enable coordinated movement. Activities that improve balance and coordination should be encouraged but in ways that do not isolate someone who cannot pick up movements as quickly.