A few useful links to things that make life easier;
Resources for Hypermobility:
NHS Choices on EDS (UK)
The Villefranche Nosology and Beighton Criteria (Hosted by EDNF USA)
NHS Hypermobility Guidelines – The Physio Pack (Internal link)
The Mankoski Pain Scale – A words-based version of the 1-10 scale, with descriptions (US)
Sleep apnoea and disordered sleep breathing in EDS – CHEST journal (US)
Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestation – Marco Castori, a descriptive paper with photos of clinical features. (US National Library of Medicine)
Psychiatric disorders in EDS are frequent, diverse and strongly associated with pain – Hershenfeld, Wasim, McNiven, a paper about mental illness in EDS (Rheumatology International)
Ehlers Danlos, Hypermobility Type – Howard P Levy, a paper listing synonymous diagnoses (Including the obsolete “benign joint hypermobility”) and management/treatment courses. (GeneReviews, Mar 2016)
Revised Villefranche Criteria – Peter Beighton, Anne De Paepe, Beat Steinmann, Petros Tsipouras, and Richard J. Wenstrup (1997 American journal of Medical Genetics) – The Villefranche criteria and the Beighton criteria, in the original paper format.
Differential diagnosis and diagnostic flow chart of joint hypermobility syndrome/ehlers-danlos syndrome hypermobility type compared to other heritable connective tissue disorders – Marina Colombi, Chiara Dordoni, Nicola Chiarelli, Marco Ritelli (March 2015, American Journal of Medical Genetics)
Resources for Medication
A patients’ guide to opioids -All Wales Medicines Strategy Group, in collaboration with NICE (UK)
Resources for Mental Illness
CALM (Campaign Against Living Miserably) – Men’s mental health charity and helpline (UK)
Resources for UK benefit claims
Benefits And Work UK (Guides to claiming PIP, ESA and others)
Resources for Tailoring
Cutters’ Practical Guide to Men’s Garments (1893-1898, vol 1-4, 9-13)
Cutters’ Practical Guide to Ladies’ Garments (1893 edition)
Tailors’ bench guides containing instructions for cutting patterns for men’s and ladies’ clothing, in a variety of styles and purposes. Not exactly “patterns”, but full of diagrams to work from.
Resources for Motorcycling:
The National Association Of Bikers With Disabilities (UK) – Ran by disabled bikers, for disabled bikers, helping with advice and funding of disability adaptions to help disabled bikers, whether new-to-motorcycling, returning after gaining a disability, or pre-empting future declines in health.
Motorcycle Action Group (UK) – A Riders’ Rights organisation, lobbying parliament and industry to keep motorcycling safe and practical.