In this post, IP Ability committee member Megan Rannard, trainee trade mark attorney at Marks & Clerk LLP, sheds light on the diagnostically murky world of Ehlers Danlos Syndrome and other rare conditions, and why sometimes it’s crucial to look for the unexpected.
Sunday 31 January 2021 is the International Day of the Zebra, a day initiated by conservation groups to celebrate that stripy member of the equine family, but also celebrated by many in the disability community as a symbol of those with rare conditions. In particular, the Ehlers Danlos Syndrome community (to which I belong) has taken the zebra as part of its identity and as a way to bring people together who suffer from the condition.
The zebra symbol originates from the phrase often taught to medical students – “When you hear hoofbeats, don’t look for zebras”. This is used to encourage student doctors to look for more familiar diagnoses when presented with a set of symptoms, rather than considering a more unusual (and perhaps surprising) diagnosis. The Ehlers Danlos community has taken this phrase and adapted it into a new mantra to reinforce the importance of considering all possibilities during diagnosis: “Sometimes when you hear hoofbeats, it really is a zebra”.
Although the Ehlers Danlos community uses the zebra as its symbol, this principle does not just apply to people with this particular condition – a medical zebra can be anyone who suffers from a rare condition that is often misdiagnosed by doctors and that can take many years to be correctly identified and treated. Medicine.net defines a zebra as “a very unlikely diagnostic possibility”.
Zebras are also a useful symbol to highlight the differing symptoms that many disabled people experience. Whilst zebras all appear to look the same, each of their stripes are unique, in a similar way to human fingerprints. For many, this symbolises the range of different symptoms and unique experiences of people within the disabled community. For example, there are thirteen types of Ehlers-Danlos syndrome, and whilst we all fall under the same umbrella diagnosis, we will each have varying symptoms to differing degrees – making everyone’s experience with the condition different. As such, zebras can also serve as a reminder to acknowledge the individual experiences of people with disabilities, and the unique needs that we all have within our daily lives and our work lives.
Finally, although zebras all have visible stripes, not all people with disabilities have visible symptoms. For example, I look perfectly normal and healthy around 80% of the time (the other 20% includes time spent on crutches or in a sling!), despite the fact that I regularly struggle with the most menial daily tasks, including those at the workplace. For example, opening particularly heavy doors or manoeuvring a heavy office chair could spell disaster for my very loose joints! In the same way that medical zebras can fall through the cracks in the healthcare system, they can also fall through the cracks in the workplace on the basis that their illnesses do not manifest in a visible way, and their symptoms and struggles can therefore be difficult to understand and make allowances for.
This Zebra Day, I would encourage everyone to become mindful that the physical struggles of those around you in the workplace (and indeed in general life) may not be immediately noticeable. We should all look to practise a culture of acceptance and support for those who may suffer from complicated conditions. In the same way that doctors should avoid presuming that “hoofbeats signify horses”, so should we all avoid presuming that everyone’s experiences in the workplace are the same – everyone has their own unique stripes.
About Ehlers Danlos Syndrome
The Ehlers Danlos Syndromes are a group of thirteen connective tissue disorders. Connective tissue connects, supports and protects other tissues and organs in the body – examples include the skin, ligaments, tendons and blood vessels. Whilst each type of Ehlers Danlos Syndrome (EDS) is different, their symptoms are caused by weak connective tissue, generally as a result of genetic mutation.
Symptoms vary between the different types of EDS and each type has a unique set of clinical criteria that can help with diagnosis though for many, the journey to diagnosis is a very long and difficult one. Some of the more common symptoms that are often shared by the different types of EDS include joint hypermobility (an increased range of motion of some or all joints in the body), tissue fragility, and fragile/stretchy skin. Connective tissue is found throughout the body in all major systems meaning that symptoms of those with EDS can also include chronic pain, dizziness, digestive disorders, dizziness and palpitations, chronic fatigue and problems with internal organs such as the heart and lungs. EDS cannot be cured meaning that sufferers’ symptoms require day-to-day management and ongoing treatment often by a variety of different healthcare professionals.
Personally, my most significant symptom is joint hypermobility and the chronic pain and fatigue that results from this, though I do also have several other co-morbidities that are common in those with EDS. My joints are loose enough that they dislocate (either fully or partially) very easily and often as a result of day-to-day activities such as opening jars or cartons, putting the kettle on, taking the bins out, or going food shopping. In the workplace, this can include simple tasks such as opening doors, manoeuvring office chairs or even typing. Whilst I have learned to adapt where I can, there are some tasks that remain problematic and I often have to remind myself to be careful!
Further information on the types of EDS and the clinical diagnostic criteria for each type can be found on the Ehlers Danlos Support UK website. EDS UK also runs a helpline, local support groups and a Facebook page for anyone affected by the condition (including family members and carers). Their website also includes information on living with the condition, related disorders, and information on specialist healthcare professionals in the UK, to name but a few of the many amazing resources available.