In March 2018, I held my Health Fair in Morley Town Hall, at which a wide variety of stall holders offered help and support to local residents. You can read more about my Health Fair, and EDS, on my website here: CLICK ME
It was here I first met Lydia, aged 9, who sadly has Ehlers-Danlos Syndrome. I promised her I would take her letter and comments directly to the Minister for Health and Social Care, Matt Hancock. Following this meeting I raised Lydia's story and EDS awareness in the House of Commons, and the Minister agreed to meet with me to sit down and discuss this in further. I had this meeting in May, you can read about this: here.
I am pleased to say that the Minister has now responded to Lydia in a letter, which can be seen below. Please note for data protection reasons, Lydia's personal details have been redacted. I am committed to raising the awareness of Ehlers-Danlos Syndrome to ensure all those living with EDS can access diagnosis and the support that they need, I am happy that the Minister agrees and I will continue to monitor this situation going forward to see what more can be done to help those living with EDS.