The Ehlers-Danlos Syndromes, commonly known as EDS, are thirteen genetic conditions, affecting the connective tissue in our bodies. This can lead to chronic pain and fatigue, digestive disorders, reproductive trouble, restrictive lungs and other potentially life-threatening conditions.

EDS is a spectrum disorder, meaning that no two people with Ehlers-Danlos are the same, as they may have multiple symptoms from different subtypes. A close friend of mine was diagnosed with EDS last May at age 18, after suffering from symptoms throughout her whole life.  Seemingly a healthy child, Brielle and her family were unaware that there was a connection between her fainting, bad fatigue, gastrointestinal issues, dislocations and ENT problems until her diagnosis. She is suspected to have hEDS (Hypermobile Ehlers-Danlos Syndrome), but suffers from vascular symptoms too.

Since Brielle’s diagnosis, her health has declined rapidly. She has currently been in hospital for over a month, assisted by a temporary feeding tube, and on her discharge will need a special supportive wheelchair to get around.

‘The wheelchair will be a big part of my life,’ she states, ‘We’re even having to get ramps installed at home and have the house renovated to be wheelchair friendly’

When asked how she is coping, Brielle went on to tell me, ‘I have my good and bad days. I’ve got my feeding tube out now, but eating is still a big struggle and I can only get about half a sandwich in for meals. The pain is still really excruciating but that won’t ever go away.’

Not only is the physical aspect of EDS causing her immense pain and discomfort, but she admits ‘it’s getting pretty hard mentally as well. I’m really starting to miss home because I’m 3 hours away from everyone and I’ve been in hospital for over 6 weeks now’

Luckily, she is in great hands and has ‘really nice nurses and doctors, so that definitely makes it easier’. She is putting an amazing amount of effort into physiotherapy and her recovery in general, staying positive and even finding time to think about friends and relationships and continuing to support the people in her life.

To document her experience, Brielle has started an instagram page where she shares her EDS. If you are interested, take a look and show her the support she deserves, @brielle.gracexx

To show your support for other incredible people just like Brielle, visit

Yasmin Ammour - Norbury Manor BEC