Helping pupils with EDS and HSD stay physically active
Being physically fit and participating in physical activity and sport is an important part of a child’s development. Children and young people with EDS, HSD or hypermobility 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 vEDS).
Those with HSD or hypermobile EDS (hEDS) may be advised not to participate in contact sports, but, if determined to do so, the risks can be minimised by maximising strength, agility and stamina and optimising technique. Everyone involved in working with young people and sport needs to be aware of the issues relating to hypermobility, sport and performance, and to consider ways to minimise risks, in order to prevent injury, prepare young people for sport and to optimise performance / facilitate optimal recovery through appropriate rehabilitation.
In terms of exercise and sport, what each individual with EDS or HSD 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. This, however, does not mean that a pupil with hEDS or HSD 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 young person with hEDS or HSD is fit and has good control of their joints, their flexibility and their extra mobility may be an advantage. If, however, a child is struggling with painful joints, subluxations, dislocations, fatigue etc., a revised programme incorporating sports and physical activities which involve less risk is recommended. Additionally, inclusion of rest breaks, 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 HSD 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 ruck-sacks. 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 which 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 to master required movements.
Monitor the young person’s level of exertion more closely in extreme weather conditions, because heat and cold may add additional stress to a pupils’s autonomic (involuntary) nervous system and may affect their endurance and exertion level.
Allow pupils to wear protective gear to augment mechanical support and proprioception. For example, 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.
Be receptive to a pupil who reports 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 EDS and HSD. 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 EDS or HSD 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.
During PE K. was taking part in volleyball without any issues, as she has done many times in the past. Suddenly she walks to the side of gym hall and complains of pain in her arm. The teacher doesn’t see anything and asks her to continue playing, due to feeling awkward K. does continue. Later in the day her wrist and hand start to swell and turn blue. After a visit to the hospital with parents in the evening the conclusion is she dislocated her thumb and overextended her wrist backwards, in this particular case causing a hairline fracture in the wrist.