To mark #rarediseaseday we spoke to Lucy who is a member of our youth panel. Lucy learned to ride as an adult as part of Glasgow University’s equestrian club and lives with a connective tissue disorder called Hyper-Mobile Elhers Danlos Syndrome.
Lucy explains that “Hypermobile Ehlers Danlos Syndrome (hEDS) is a connective tissue disorder where the collagen in your body doesn't function properly. As collagen is found almost everywhere in the body, this leads to a wide range of issues, the most common being joint issues. It causes joint hypermobility which can lead to frequent joint dislocations and subluxations as well as chronic joint pain and muscle weakness/ stiffness. These can affect riding in a wide range of ways such as reduced leg and arm strength and increased chance of injury.”
They also note that their advice for coaches who train riders with disabilities or chronic illnesses is “to work with the rider and be aware that traditional methods may not work. Give the rider the confidence to communicate when something isn't working as many chronically ill people think we just need to try harder instead of accepting we need to adapt the way we do something. For example some people may not have the leg strength to communicate with the horse in a traditional way so work with the rider to try using vocal cues or communicate with their seat more”.
You can read more about Lucy’s experience of learning to ride while managing their hEDS below.
My name is Lucy, I’m 23 and live in Fife. I horse ride and also have a rare disease called Hypermobile Ehlers Danlos Syndrome. I started horse riding when I was 19 through Glasgow university’s Equestrian club and quickly fell in love with the sport.
Hypermobile Ehlers Danlos Syndrome (hEDS) is a connective tissue disorder where the collagen in your body doesn't function properly. As collagen is found almost everywhere in the body, this leads to a wide range of issues, the most common being joint issues. It causes joint hypermobility which can lead to frequent joint dislocations and subluxations as well as chronic joint pain and muscle weakness/ stiffness. These can affect riding in a wide range of ways such as reduced leg and arm strength and increased chance of injury.
Despite the negative impacts of chronic illness, horse riding is actually an amazing way for chronically ill people to get exercise. Riding puts less strain on the joints than traditional modes of exercise, like running, while allowing you to build muscle and stamina. As well as that there are many ways to adapt tack to suit an individual's needs such as looped reins or wider stirrups. There is a wide range of disciplines in the equestrian world meaning people can enjoy exercise at their own pace. Some chronically ill people may benefit from longer low intensity exercise such as hacking while others may benefit more from shorter high intensity workouts like schooling. This range also allows people to adapt and change plans depending on how they feel that day as chronic illness is very unpredictable.
Currently chronic illnesses/ dynamic disabilities aren't included in para-dressage classifications which is why you won't see much representation of people with hEDS in the competitive equestrian world. Despite this many chronically ill equestrians still ride to a competitive level, especially in sports like Endurance Riding, and many take part in unaffiliated competitions.
If you are a coach wondering how to help chronically ill riders, the best advice I’d give is to work with the rider and be aware that traditional methods may not work. Give the rider the confidence to communicate when something isn't working as many chronically ill people think we just need to try harder instead of accepting we need to adapt the way we do something. For example some people may not have the leg strength to communicate with the horse in a traditional way so work with the rider to try using vocal cues or communicate with their seat more.
As well as that, chronically ill people often won't progress in the way everyone else does, they may be improving their strength and stamina but a flare up or injury could cause a setback. This can be very discouraging in a setting where everything is focused on goals such as being able to jump the highest or winning dressage competitions. It's important to create an environment where everyone feels welcome to ride regardless of ability and can just have fun.
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