It is May and it is Ehlers-Danlos Syndromes awareness month!
Seems that growing awareness greatly pushes things forward in terms of medical conferences around the world, research and a new classification of the Ehlers-Danlos Syndromes. Not to mention an ultra generous donation of 1,000,000 by an anonymous donor! Our deepest gratitude and appreciation to them whoever they are!
The Ehlers-Danlos Syndromes are a group of connective tissue disorders due to defective collagen. This causes hypermobility, flexible, fragile and permeable tissues and affects the whole body, from joints to muscles, to skin, to organs, to blood vessels. It is frequently followed by other comorbidities such as Postural Orthostatic Tachycardia, Dysautonomia and Mast Cell Activation Disorder.
One of the best places to find all the information you need about all the latest news about the research results so far and not only is the Ehlers-Danlos Society at: https://www.ehlers-danlos.com
Having said that I cannot leave out the Ehlers-Danlos UK at: https://www.ehlers-danlos.org nor the Hypermobility Syndromes Association at: http://hypermobility.org or the Dysautonomia International at: http://www.dysautonomiainternational.org since the latter comes almost piece and parcel with EDS.
Another useful link about the relation of Mast Cell Activation Disorder with EDS can be found here: https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/ as research is finding out an all the more tighter connection between the two disorders.
Finally an interesting connection is that of the common occurrence of Autistic spectrum traits in EDSrs, and here is an interesting read about it: https://www.ehlers-danlos.com/why-i-love-knowing-i-have-high-functioning-autism/
Now that you got your reading for the month, I hope you will get a better understanding about this complicated and multifaceted disorder, the details of which I could not even begin to describe in a short blog post, or even longer for that matter.
My wish and dream is that more people whose voice is widely heard would advocate and spread awareness for the Ehlers-Danlos Syndromes. That includes anyone famous, acknowledged and respected for their expertise, well known for their humanitarian work and in general anyone who can make waves with their presence and actions.
You know who you are!
Please join your voice with ours to make the invisible visible. To grow awareness for EDS, to promotes research, to find a cure!