'ER-lers dan-LOSS'
A degenerative connective tissue disorder, which effects every system of the body, and thus requires a multi-disciplinary medical approach to management.
CONTRARY TO POPULAR MEDICAL BELIEF, A PATIENT DOES NOT HAVE TO HAVE STRETCHY SKIN TO HAVE CERTAIN TYPES OF EHLERS-DANLOS/HSD.
CURRENT KNOWLEDGE STATES TENASCIN X INVOLVEMENT MAY LEAD TO AN INCREASED RISK OF INTERNAL ORGAN/VESSEL RUPTURE (EVEN IN HYPERMOBILE TYPES).
Note: This list does not include all symptoms.
Not all people will have all the symptoms.
Some may have EDS and have no/few problems.
Can cause death through internal organ rupture, aortic dissection or rupture and through complications such as infection, poor healing, malnutrition, dehydration, seizures, etc. Some conditions associated with EDS/HSD may be life-threatening (i.e. Severe Craniocervical Instability/CCI).
Clinical examination u sing the Beighton and Brighton Scales where the Hypermobile type is suspected, as the gene for this type has not knowingly been identified.
Genetic testing for types other than the Hypermobile Type (HT-EDS) became the expected way to diagnose the condition, following the introduction of controversial Genetic Diagnostics Criteria.
Can include a urine test for the very rarely recorded Kyphoscoliotic type.
THERE IS NO CURE.
NEW CONTROVERSIAL DIAGNOSTICS WERE INTRODUCED IN MARCH 2017, AND WE NOW HAVE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS. WE WILL BE UPDATING THIS SECTION.
In 1998 the Villefranche Nosology identified ten types of EDS. In 2016, a New York Symposium reclassified them, and now seven subtypes exist.
Some types are rarer than others. Each have specific traits but all carry common characteristics too. The gene for the Hypermobile Type has not been found.
Patients sometimes show symptoms associated with another subtype, though the official line currently states an individual can only have one type of EDS. Genetic theory shows mutation of more than one 'collagen gene' is possible, and a UK family with
HT-EDS were identified as carrying the COL3A1 gene which causes VT-EDS.
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