What is... Ehlers Danlos Syndrome?

Sally BrittonEhlers-Danlos Syndrome, Rare Conditions

Snap Care began supporting children and adults with disabilities and additional needs back in 2001. Over the years we have worked with clients who have a range of conditions, some more widely known than others.

In this series, we look at some of the lesser-known conditions to help raise awareness and provide information that can be especially useful if supporting a client with the condition.

 

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of rare, inherited connective tissue disorders that affect the body's ability to produce collagen, leading to hypermobility, skin fragility, and a range of debilitating symptoms. This condition, often undiagnosed or misdiagnosed, significantly impacts the lives of those affected.

Individuals with EDS experience joint hypermobility, chronic pain, skin that bruises easily, fatigue, and in severe cases, life-threatening complications. The spectrum of EDS subtypes includes classical, hypermobile, vascular, and others, each with distinct features and severity.

The challenges of EDS extend beyond the physical. Mental health struggles, including anxiety and depression, often accompany the chronic pain and uncertainty of the condition. The lack of awareness and understanding in society further complicates the daily lives of those with EDS, as the condition is often misunderstood or overlooked.

We have supported two clients with this condition. Understanding how the condition affects individuals has been helpful for all parties. For example, when working with the second client, we knew it was likely that email correspondence would be easier for the client than extended or multiple phone conversations, due to fatigue. 


Here are a few helpful links:

EDS is a debilitating condition that is often not recognised or understood even by those in the medical profession. Organisation such as Ehlers-Danlos Support UK, provide information, support, and resources for people living with EDS. Their website offers guidance, community forums, and local support groups across the UK.

https://www.facebook.com/EhlersDanlosUK/


The National Health Service (NHS) website provides information about EDS, including the different types, symptoms, diagnosis, and treatment options available in the UK.

https://www.nhs.uk/conditions/ehlers-danlos-syndromes

@EhlersDanlosUK  #EhlersDanlosSyndrome #EDS #SnapCare

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