Alliance Calls For Action On Ehlers-Danlos Syndrome Diagnosis

The Alliance Party has called on the Health Minister to commission effective diagnosis and management services for Ehlers-Danlos Syndromes across Northern Ireland.

Alliance MLA Connie Egan has presented a petition to the Assembly led by Ehlers Danlos Support UK.

The North Down MLA said: "I feel privileged to present this petition on the urgent action needed to support the diagnosis and management of Ehlers-Danlos Syndromes (EDS). EDS has a potentially high prevalence and debilitating body-wide symptoms, and I was extremely concerned to learn from my local constituents that there is no clear primary care pathway to receive treatment. There are substantial gaps in knowledge on this in Northern Ireland, leading to common misdiagnosis and harmful consequences for those seeking medical help.

"This petition is an important step forward in bringing about sorely needed change. We must take inspiration from elsewhere in the UK, and begin to collect data and educate on EDS, whilst working to help support those impacted. "I send my sincere gratitude and admiration to Ehlers Danlos Support UK, particularly our local campaigners in NI. We should not have to rely on volunteers to advocate for and organise a private diagnosis. I will be writing to the Minister later this week to outline their case in more detail."

Susan Booth, CEO of Ehlers Danlos Support UK, added: "Today is an incredibly important turning point for everyone living with EDS and hypermobility spectrum disorders in NI. Our voices are being heard by the Assembly and will hopefully turn into action on what is a desperate situation for so many. Our vision at The Ehlers Danlos Support UK is that 'Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care'."

Mandy McCreight, Lead Volunteer in NI, concluded: "I hope today will be the first step in paving the way to establishing a care pathway for diagnostic and treatment services for all those in NI with EDS & HSD. The #EnoughisEnough campaign was created to highlight the neglect and harm caused by the lack of management services for EDS and within the NHS.

"It's time to make these invisible conditions more visible in the NHS. EDS and HSD could affect approximately 4,000 in NI, so this is why this petition and the conversations that follow are vital."

Find a link to the petition here.