After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
International Executive Director Lara Bloom was interviewed recently by “The Moment-with Maxine Mawhinney” raising awareness about EDS/HDS and talking about her moment when she walked the London Marathon in 2011.… Read More Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.
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Members from both Sunderland and Newcastle areas are welcome… Read More ‘Strut your stripes’ in Sunderland TODAY 1 – 3 pm at our first ever EDSUK meet up
Autonomic Dysfunction Sheet (PoTS) Article / Paper by: Dr Alan Hakim MA FRCP, Hospital of St John and St Elizabeth, London. Professor Rodney Grahame CBE MD FRCP FACP, Hospital of St John and St Elizabeth, London. Originally posted http://www.ehlers-danlos.org Medical information | Autonomic Dysfunction This post is not aimed at everyone with EDS as explained in… Read More Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK