LITERARY PIONEERS Marcia Brock and Cassandra A. Campbell have collaborated to pen a highly anticipated book about living with Ehlers Danlos Syndrome (EDS).

The debilitating genetic connective tissue disorders can take up to 20 years to be diagnosed – and until recently, was thought to be a rare disorder.

Both authors, who have been diagnosed with EDS, are turning their focus to raising awareness about the disease with their book Broken, reassuring the EDS community ‘there is still hope’.

Condition

The Ehlers-Danlos syndromes are 13 heritable (genetic) connective tissue disorders affecting the quality of collagen in every part of the body. Last year bestselling singer Sia Furler disclosed she had EDS, casting a rare spotlight on a little-known condition that is affecting the lives of thousands of people and is in dire need of awareness.

“Following on from our YouTube channel EDS Unplugged, we wanted to raise more awareness about Ehlers-Danlos Syndrome and other chronic illnesses.”

Cassandra Campbell

Men and women are equally at risk of inheriting the conditions, but their effects tend to be more severe for women. The most common form, hypermobile EDS (hEDS), accounts for about 80 per cent of the EDS population, and is characterised by extremely flexible joints, making them more likely to be dislocated or sprained.

Those with the most dangerous subset, vascular EDS, have a significantly shortened life expectancy because they are more likely to die from ruptured aortas, ruptured bowels, and brain haemorrhages.

EDS tends to branch out and affect multiple bodily systems, causing seemingly unrelated systems that make it difficult to diagnose and leaving sufferers feeling confused, isolated and in despair.

Stepping in to bridge this gap with Broken’is Marcia Brock and Cassandra Campbell.

Complete

Marcia is respected as the UK’s youngest Microsoft female engineer and followed up by becoming the first black woman to complete the Cisco Wireless Networking qualifications and is the founder of non-profit organisation SmartKid.

Cassandra, has a rich background in supporting young people and adults to empower themselves though personal development workshops, mentoring and coaching, using her experiences and academic knowledge to help people take the steps needed to transform their mindsets.

The duo first started raising awareness for Ehlers Danlos Syndrome (EDS) three years ago with a series of videos entitled, EDS unplugged sharing the journey of two women living with EDS.

Later the pair teamed up with main UK EDS charity ehlers-danlos.org and have been consistently running workshops building confidence in children with EDS.

“Our hope is that this book changes lives by helping people who are diagnosed to know they are not alone.”

Marcia Brock

Last year, they raised awareness via EDS UK’s ground-breaking campaign #TimeToDiagnosis where both Cassandra and Marcia showcased the length of time it took for them to finally get an EDS diagnosis, with Cassandra’s at 20 years and Marcia’s was 11.

Cassandra said: “Following on from our YouTube channel EDS Unplugged, we wanted to raise more awareness about Ehlers-Danlos Syndrome and other chronic illnesses.

“Not only for those living with chronic illnesses, but also to help their loved ones gain a better understanding of the challenges they may face.

“Sometimes, when you’re loved one is going through something you don’t understand it’s hard to comprehend.

Impact

“Hearing it from someone else can often have more impact. Our hope is that our experiences may help others in similar situations realise that despite all the pain and disappointments, there can still be hope for the future.”

Broken was born out of their combined passion for women and health and a deep need to help those impacted by chronic illness.

A mutual need to raise awareness and provide empowerment through knowledge and support for sufferers.

Empowerment in EDS is of particular interest to Cassandra who believed that she had no future, determination or self-belief and whilst fighting for a diagnosis, managed to break through the mental, physical and emotional barriers to become the woman she is today, saying: “I want others to know that, though their experiences may differ, they too can create their alternative reality. Don’t give up on yourself, chronic illness is a part of you, but it’s not all of you.”

A fusion of tips, advice, and information, Broken, weaves the co-authors own painful experiences, offering fresh and real insight into living with EDS.

For many people with Ehlers-Danlos syndrome the journey to diagnosis will have been tough.

Poor awareness of the condition amongst medical professionals means that it can go undiagnosed.

Problems

It is common to be wrongly diagnosed with another condition first in an effort to find answers. Misdiagnoses of fibromyalgia and ME/chronic fatigue syndrome, and the label of irritable bowel syndrome when someone has digestive problems, are common.

Marcia said: “Our hope is that this book changes lives by helping people who are diagnosed to know they are not alone and also to help the people who are not yet diagnosed get the steps to know where to go to be correctly diagnosed.

Seeking diagnosis can be a long and challenging process with EDS and I want to share my experience with people that it’s not all in their head!

This book will provide tips and spaces where they can get help. The thousands of people being diagnosed with this chronic illness every year is a serious issue. Through knowledge and awareness, we can save and change lives.”