Published: 23/05/2019 Tags: Ehlers-Danlos in the News

Baroness Nicola Blackwood releases video for EDS/HSD Awareness Month

“Ehlers-Danlos syndrome is a rare genetic condition that is often misunderstood and can be difficult to diagnose. I remained undiagnosed for more than 30 years,” stated Baroness Nicola Blackwood in a recent video from the UK’s Department of Health and Social Care. “I was finally diagnosed thanks to a wonderful team at University College London and my life was completely transformed. But I know that I was one of the lucky ones. Not everyone is in the same position and will be diagnosed. That needs to change now.”

To mark Ehlers-Danlos syndrome and HSD Awareness Month, UK’s Minister of Health Innovation Nicola Blackwood shared her EDS journey as she discussed new strategies in improving patient care for individuals living with rare diseases. She also calls on people to take part in health research to speed up diagnosis and develop cutting-edge treatments.⠀

https://www.facebook.com/ehlers.danlos/videos/824824611236349/

 

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