There are special recommendations for anesthesia in people with EDS. Surgery in people with EDS requires careful tissue handling and a longer immobilization afterward. Symptoms vary in severity, even in the same disorder, and the frequency of complications varies.
Some people have negligible symptoms, while others are severely restricted in daily life. Extreme joint instability, chronic musculoskeletal pain, degenerative joint disease, frequent injuries, and spinal deformities may limit mobility. Severe spinal deformities may affect breathing.
In the case of extreme joint instability, dislocations may result from simple tasks such as rolling over in bed or turning a doorknob. Secondary conditions such as autonomic dysfunction or cardiovascular problems, occurring in any type, can affect prognosis and quality of life. Although all types of EDS are potentially life-threatening, most people have a normal lifespan.
However, those with blood-vessel fragility have a high risk of fatal complications, including spontaneous arterial rupture, which is the most common cause of sudden death. The median life expectancy in the population with vascular EDS is 48 years. Ehlers—Danlos syndromes are inherited disorders estimated to occur in about one in 5, births worldwide. Initially, prevalence estimates ranged from one in , to , people, but these estimates were soon found to be too low, as more was studied about the disorders, and medical professionals became more adept at diagnosis.
EDS may be far more common than the currently accepted estimate due to the wide range of severities with which the disorder presents. The prevalence of the disorders differs dramatically. The others are very rare. For example, fewer than 10 infants and children with dermatosparaxis EDS have been described worldwide. For example, the chance of being a carrier for dermatosparaxis EDS is one in in Ashkenazi Jews, whereas the prevalence of this variation in the general population is one in 2, The Ehlers Danlos Society is a global community of individuals, caregivers, medical researchers, healthcare professionals, and supporters dedicated to bettering the lives of those affected by Ehlers-Danlos syndromes EDS , hypermobility spectrum disorders HSD and related conditions.
They are known for their international learning conferences, collaborative research and education initiatives, awareness campaigns and community-building opportunities. Alan Spanos of Chapel Hill, North Carolina has in recent years dedicated his practice exclusively to the care of patients with Ehlers-Danlos syndromes and related conditions.
Spanos is no longer taking new patients, he continues to use his expertise to help EDS patients through authoring comprehensive, easy-to-follow articles for patient and physician use. All resources are posted to his website as print-friendly PDFs.
EDS Awareness helps patients find local, in-person support groups and provides resources for those wishing to start their own support group. In addition, the site gives recommendations for EDS-friendly products, coping tips and tricks, and strategies for addressing health concerns with one's physicians and specialists.
Many in the Ehlers-Danlos community feel this aphorism has contributed to the lack of awareness and understanding surrounding Ehlers-Danlos syndromes and has impeded diagnosis of EDS and other rare diseases. The zebra became the unofficial mascot for those with EDS and HSD, representing the complex nuances of living with a rare or unusual disease. Some feel empowered embracing the "zebra" label as a means of reclaiming various traumas experienced in the journey to diagnosis and treatment, including medical gaslighting , neglect and misdiagnosis. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD," explains The Ehlers-Danlos Society president and CEO Lara Bloom.
Many sideshow performers have EDS.
Two performers with EDS currently hold world records. Contortionist Daniel Browning Smith has hypermobile EDS and holds the current Guinness World Record for the most flexible man as of , while Gary "Stretch" Turner shown right , sideshow performer in the Circus Of Horrors, has held the current Guinness World Record for the most elastic skin since , for his ability to stretch the skin on his stomach 6. Ehlers—Danlos-like syndromes have been shown to be hereditary in Himalayan cats , some domestic shorthair cats,  and in certain breeds of cattle.
It has a similar treatment and prognosis. Animals with the condition should not be bred, as the condition can be inherited. Degenerative suspensory ligament desmitis DSLD is a similar condition seen in many breeds of horses. However, DSLD is being recognized in all age groups and all activity levels. It has even been noted in newborn foals. From Wikipedia, the free encyclopedia. Group of genetic connective tissues disorders. Piezogenic papules on the heel of an individual with hypermobile EDS.
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Ehlers-Danlos Syndrome | EDS | MedlinePlus
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