A lifetime of missed opportunities
It is clearer now, more than ever, that people like Hallie, are having the trajectory of their lives determined by the missed opportunities of doctors to make an educated diagnosis of [...]
In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Thought Management, Understanding
Posted When the pieces finally fit: Hypermobile-EDS
Sometimes I look back over my life, and I am thankful that I was born in the modern era. Ehlers-Danlos Syndrome runs in families. Considering all the trouble we have in 2019, to get the correct [...]
In Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, Therapy Options
Posted Finding your way to keep moving forward with Hypermobility
Hypermobile Ehlers-Danlos Syndrome a genetic condition, it is in our DNA, and it’s NOT CURABLE! I have written that in capitals because it’s a concept that’s hard to grasp. Take [...]
In Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, POTS, Therapy Options
Posted Therapy Spotlight: Paediatric Physio
We are doing a series on different therapies over the next few months, and are interviewing some therapists who have experience working with hypermobility conditions. To kick us off, we have [...]
In Adults, Community, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Marfan Syndrome
Posted Hypermobility Awareness Week 2019
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, [...]
One step forward, two steps back
I am sure that everyone at some point has been able to relate to the phrase, “one step forward, two steps back”. Right? For those of us with a chronic illness, it can feel like that [...]