The "Living well with a heritable disorder of connective tissue" is an A5, full colour booklet with 34 pages, which covers day to day living with one of the hypermobility syndromes (also known as heritable disorders of connective tissue or HDCTs)
We recommend this guide for people with Hypermobility Spectrum Disorder (Joint Hypermobility Syndrome, Hypermobility Syndrome, BJHS), Ehlers-Danlos syndrome (all subtypes), Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome etc.
These conditions can be disabling, and this guide shares information about these conditions and what we know works in terms of management, based on the evidence currently available.
With a brief overview of hypermobility syndromes, this guide goes on to focus on self management - what self management is, self management skills, managing 'flare-ups', relationships, stress and anxiety, complications, and a section on making the most of what the NHS can offer. A great addition to a self-care toolkit, and a great way to help loved ones understand a bit more about the condition.
The guide is produced by the HMSA, under the guidelines laid out in NHS England’s Information Standard.