Help Ehlers-Danlos Syndrome sufferers like my sister

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Those with Ehlers-Danlos Syndrome (or EDS) can often live relatively normal lives, but for some like my sister Debbie the condition is debilitating and comes with life threatening complications. 


EDS is a group of genetic connective tissue disorders. As well as symptoms such a hyper-mobility, it can also cause chronic pain, frequent joint dislocation, extreme fatigue, heart problems and many other serious medical problems. 


Although the more serious cases of EDS such as Debbie's are rare, around 1 in 5000 people have EDS. But because there is so little research around EDS and its associated illnesses, not enough is known about the condition for sufferers to be treated properly.


In Debbie's case, she now has Cranial Cervical Instability and Atlanto Axial Instability. This means that her neck is unstable and is causing compression of the brain stem and the artery which leads to her brain. She is at risk of a complete neck dislocation which could leave her paralysed, cause a stroke or a heart attack.The operation she requires to save her life is not available on the NHS to EDS sufferers. Instead she must raise £60,000 so that the operation can be carried out by an EDS specialist doctor in Spain. 


So I’m calling on the government and the NHS to review its funding and research for Ehlers-Danlos Syndrome and its associated conditions.

 
Please sign to help my sister and the many other people suffering from this condition get the best medical treatment possible.

If you would like to read more about "Debbie's Fight for Life" please visit www.debbiesfightforlife.com

Thank you for taking the time to read,

 Nicola Tremayne



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