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The Importance of Raising Awareness for EDS and HSD within Society

May is Ehlers Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month, and we here at Bursting with Potential want to share in raising awareness of these often-overlooked conditions.

We intend to raise awareness of these conditions within this blog post, and we hope you shall leave this post with a better understanding of the condition and be able to tell others of this often overlooked condition.

What is EDS & HSD?

Ehlers Danlos Syndrome (EDS) is a genetic connective tissue disorder, which affects the collagen within the body. Collagen is a protein which is the main building block of the body, providing strength and support in the ligaments, tendons, and cartilage. With the body having such a high percentage of collagen; EDS can affect the whole body. This genetic condition is hereditary, and is with an individual from birth, with symptoms not always showing immediately. EDS is typically referred to as an invisible illness. Within the spectrum of EDS, there are 7 different types of EDS, with Hypermobility being the most common. Generally, a high percentage of the population is hypermobile. It is very important to note that you can be hypermobile, but not have Ehlers Danlos syndrome.

Examples of the others are:

  • Classical,
  • Vascular,
  • Kyphoscoliotic,
  • Arthrochalasia,
  • Dermatoparaxis

How does EDS & HSD affect an individual?

 The scope of EDS & HSD is so broad, symptoms are generally unique to an individual, with one individual maybe living with different symptoms to another individual. However, EDS & HSD, and other chronic pain conditions, are often spoken about in relation to the spoon theory. This is a simple way as to explain how these conditions affects someone’s day to day life.

Let’s say you have 12 spoons, each representing your energy for the day. Once those spoons have run out, you can’t do anything else for the day. So, imagine if getting dressed, showered, and ready for school/work was 3 spoons… well its hardly 9am at that point and you are 3 spoons down already! By 12pm, you’ve had a meeting and a coffee with a friend, that’s 2 more down. And it just continues from there. This perfectly represents the energy levels of someone with a chronic condition such as EDS & HSD. It can lead to the individual prioritising their day to life activities, which is hard, as after all, trying to find time to do the things you need to, and do the things you want to, like socialising; well, it’s frustrating. But it’s important for individuals with EDS & HSD, to pace themselves.

You may be wondering more specifically, how can EDS & HSD affect an individual?

Well, it can cause:

  • Dislocations,
  • Subluxations (partial dislocations),
  • Chronic fatigue,
  • Chronic pain,
  • Gastrointestinal difficulties,
  • Brain Fog,
  • Anxiety,
  • Easy Bruising/Poor Healing,
  • Difficulties with Mobility,
  • And in some cases, Postural Orthostatic Tachycardia Syndrome – PoTS

Tips to help EDS & HSD

EDS & HSD are hereditary and can’t be cured. However, symptoms can be managed through the following:

  • Swimming – the water supports the joints, and strengthens muscle, which in turn helps the joints.
  • The general upkeep of any prescriptions.
  • Remembering to pace! These conditions can affect an individual’s social life, due to being too fatigued to be able to attend social events. It is important to pace, to avoid exhausting oneself and being out of action for days, or even weeks.

Why is raising awareness of EDS & HSD so important within Society?

The journey to a diagnosis for either EDS or HSD, can often be a long and challenging road, with a main reason being poor awareness of the conditions amongst medical professionals. This lack of awareness can lead to individuals being misdiagnosed, being given incorrect treatment, given no treatment at all, or the problem of having many years remaining undiagnosed. The simplicity of recognition towards EDS and HSD within medical backgrounds, is the key to improving the quality of life of those with EDS or HSD.

However, it is not just within a medical capacity; EDS and HSD needs more societal awareness, and general understanding of what these conditions are, and how they affect the individual living with them. From it being understood in education to employment, from relationships to friendships, and simply being able to understand disability and this often-invisible illness: EDS and HSD needs to be understood within society as to improve the wellbeing of the individuals living with this condition.

We experience this condition within our practice, and we also have these conditions within our staff too; so, it’s at the very heart of what we do, and deserves the recognition of being recognised, especially during this month, which has the aim of raising awareness of these conditions to improve the lives of those living with it.

We pride ourselves on being inclusive to all. We acknowledge and respect you for who you are, as we always strive to recognise the potential, within children and adults alike. EDS & HSD are conditions we accept, and strive to raise awareness of, both in the capacity we serve in, and in our personal lives too. This subject is of great importance to us, and we hope, it is now to you too.

Want to find out more?

Speak to our office or one of the team to find out how we can help you – We are always happy to answer any questions you might have. Fill in the form below and we’ll get back to you as soon as possible.