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.
September is Pain Awareness Month
90% of EDS patients live with some form of pain, but all experience this pain in a different way. Follow us on social media throughout the month for information, discussion, and support on the many aspects of EDS and HSD pain. #myEDSHurts #myHSDHurts
THE EHLERS-DANLOS SOCIETY EDS & RELATED DISORDERS GLOBAL REGISTRY… Read More CONNECT: Pain Awareness Month, Zebra Strong Tour, and more! | The Ehlers-Danlos Society | 11 September 2018
MSK services survey – Please let us know what is happening locally
As part of our Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target our support for improvements.… Read More Latest edition! ARMA Newletter | Arthritis & Musculoskeletal Alliance | September 2018
Wear Jeans, Change Lives on September 21st
Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.… Read More The Ehlers-Danlos Support UK Campaign Newsletter ~ Are you ready for Jeans for Genes Day?
ARMA Newletter | Arthritis & Musculoskeletal Alliance | August 2018
Harnessing a collective focus to transform MSK services… Read More ARMA Newletter | Arthritis & Musculoskeletal Alliance | August 2018
The Friend Who Keeps Me Going When My Body Won’t Go Anymore – Lisa T
The Only Body I Have – Shannon B… Read More CONNECT ~ The Ehlers-Danlos Society International Newsletter | MCAS Webinar, Amazon Smile, and More! | 8 July 2018
The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK, and our mission is to transform the quality of life of people with musculoskeletal conditions. … Read More ARMA has a new #knowledgehub
Do you have a rheumatic and musculoskeletal disease (#RMD)?
If so, you’re invited to take part in a global survey looking at what people with RMDs think about using #socialmedia for health-related purposes.… Read More Study: rheumatic and musculoskeletal disease (#RMD) | shared via Simon Stones
Acceptance is often viewed as a grieving process, which is a great way to look at it because we do mourn our old lives from when we were fit and agile.
It can be a very emotional and anxious time because our lives need to change in so many ways so that we can adapt them to what our illnesses will allow us do. We do mourn the losses of our independence, mobility, social contact and possibly even our jobs / livelihoods.… Read More Accepting ‘Chronic Illness’ (Updated Post) | Carole Scrafton
Alzheimer’s Reading Room Newsletter | Bob De Marco| Headliner: Do Persons Living with Dementia Feel Abandoned? | 11 July 2018
THE NEW HEALTH CARE | Sometimes Patients Simply Need Other Patients | By Aaron E. Carroll & Austin Frakt | The New York Times | 9 July 2018
Double click to access the article >>>… Read More #ChronicIllnessVOICE Evening Edition: ~ a health newsletter for everyone! #notjustpatients #chronicillness| 12 July 2018