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Yesterday the artist Sia tweeted about having Ehlers-Danlos syndrome and sent out a heartfelt message to others suffering pain to let them know they are not alone. We are sorry to hear of the chronic pain, fatigue, and battle with EDS that Sia is facing.
We have a dazzling, supportive EDS and HSD community here who are experiencing the same challenges, and we are grateful for the awareness Sia is creating by speaking about her experiences living with Ehlers-Danlos syndrome.
While the awareness of those in the public eye speaking out about having the condition is very welcome, we would like to address some inaccuracies that have been discussed in the subsequent news coverage.
We would like to affirm that Ehlers-Danlos syndromes are disorders of connective tissue, and are not neurological conditions, although some people may present with neurological symptoms.
Although anecdotally we think that hEDS may not be rare, based on the current literature it is classified as a rare disease. With our Global Registry and continuing support of research we hope to have a clearer idea on true prevalence in the future. The other 13 types of EDS are classified as Rare.
We are grateful for all the awareness of this neglected condition, but would appreciate that it is covered accurately by news outlets.
Featured image: Sia, live in Boston 2016. Scott Murry [CC BY 2.0 (https://creativecommons.org/licenses/by/2.0)]
For additional information on Sia, please visit the Forbes site here.
For more information on Ehlers-Danlos syndrome, please roam our site, especially ehlers-danlos.com/what-is-eds/.
Categorized in: Ehlers-Danlos in the News