Petition Closed

#EDS Educate Health Care professionals, fund research and treatment for those with Ehlers Danlos Syndrome Hypermobility Syndrome and the secondary conditions such as PoTS.

This petition had 3,233 supporters


1- We are progressively getting worse.

2- We live in a topsy turvy World where we know more about our condition than some of our Doctors do.  

3- GPs do not always want to fund testing and treatments for us.

4- Doctors and we are being failed as they simply do not understand our condition. EDS has been known about since 400 B.C, when Hippocrates produced a description.

5- Due to inadequate knowledge, a massive cost is caused to health, social care, benefits and the Education systems, as we become more ill and are repeatidly failed.

6- There is a massive cost in the justice system from all the false accusations against our community.

7- We are watching our children suffer, socially, educationally, medically and psychologically from having so few professionals understand what is going on with them.  Or worse you get your children to the experts you often have to find and fund yourself, and they are not listened to locally and you are back to where you started with no proper help.  It is soul destroying.

8- Professor Grahame says it better than anyone with this slide.   We are not heard, not believed, not treated properly. https://www.facebook.com/EhlersDanlosUK/photos/pcb.809841879067878/809841655734567/?type=1&theater  We can't be cured, we need the genes.

 

 

 

 

 



Today: N is counting on you

N A needs your help with “David Cameron @David_Cameron: #EDS Educate Health Care professionals, fund research and treatment for those with Ehlers Danlos Syndrome Hypermobility Syndrome and the secondary conditions such as PoTS.”. Join N and 3,232 supporters today.