Ehlers-Danlos syndrome is a group of disorders that affects the connective tissue. Connective tissue is found everywhere in the body and supports the skin, bones, blood vessels, muscles and organs. EDS causes a wide range of debilitating symptoms, which range from mildly loose joints to life-threatening complications.

Currently the vast majority of Ehlers-Danlos Syndrome patients who require surgery are forced to go abroad (Barcelona or the US) to receive lifesaving surgery for Craniocervical Instability, Atlantoaxial Instability & Chiari Malformation (Hindbrain Herniation). These conditions once advanced can lead to paralysis and death if left untreated. This cost falls to the patient which can be in the excess of £100,000! Patients fundraise for this via successful crowd funding efforts, without this patients are left to deteriorate.

It is neglectful of the NHS to keep refusing to complete these vital life saving surgeries on EDS patients. When patients ask why they can’t receive the surgery they are usually given one of the following answers:

1) There aren’t enough knowledgeable Neurosurgeons within the UK to complete the surgeries.

2) Patients are assessed on a case by case basis.

3) The risks are too high in EDS patients.

However ask yourselves this: if you were suffering with life-changing debilitating symptoms daily that cause you to have to live your life lying down as your spine physically cannot support the weight of your head anymore, you have an incredibly low quality of life compared to everyone else and this may eventually lead to paralysis and death, then how can you say the risks out-weigh the benefits?

If there are not enough EDS knowledgeable Neurosurgeons within the UK then we need to provide the necessary funding and training (which has so far been extremely lacking on the NHS) so that we can provide these vital lifesaving surgeries to EDS patients in the UK. Alternatively, the NHS could organise a specialist to come to the UK to complete these surgeries or to provide the correct training.

We ask you to please not dismiss this petition with "patients are assessed on a case by case basis" as the vast majority of EDS patients with these conditions have no healthcare pathway and it is like an automated rejection. There is nowhere for these patients to turn. To see the devastation of this, just look at the Go Fund Me history.

Those who have achieved their fundraising goals have gone on to have succesful surgeries after the NHS had deemed them unsuitable and see an almost instant reduction in symptoms including their comorbid conditions such as PoTS (Postural Orthostatic Tachycardia Syndrome), neuropathic pain and Gastroparesis.

You will see that the majority of these patients are also young people who should have their whole lives ahead of them. Without the NHS making changes to this archaic system, these young people have nothing but pain and sickness ahead of them, and potentially paralysis and death if they cannot raise the funds needed when surgery is required.

These are not the only aspects to take into consideration, there is also the travel cost when travelling for major surgery. Patients often have to leave some of their loved ones behind when going abroad for surgery, which means that if complications do arise patients can be without those they love during critical moments which is absolutely heartbreaking. If they could have the surgery here, their family can at least be safe in the knowledge they can visit the hospital.

The NHS values: Working together for patients, compassion, respect and dignity, improving lives, committed to quality of care and everyone counts.
If the NHS believes in the values that they publish then surely they should have this available to all UK residents. You shouldn’t have more of a privilege because you have a more well known illness. This is completely unfair.

The NHS needs to start working together to organise surgery within the UK for all EDS patients, be compassionate and realise that this is something that needs to be changed immediately. The NHS needs to start respecting the needs of EDS patients, protect their dignity, improve the lives of patients that currently have a low quality of life due to their debilitating symptoms, commit to the quality of their care by ensuring there are knowledgeable EDS Neurosurgeons within the UK that can deal with these cases. Finally, they need to make every EDS patients count!

But how does this all relate to me? After having a routine operation in 2017 i started to become incredibly unwell after and was eventually diagnosed with PoTS - Postural Orthostatic Tachycardia Syndrome, Gut Dysmotility and Hyper mobile ehlers danlos syndrome.

Due to my symptoms i recently had a flex and extention MRI and have been diagnosed with Atlantoaxial instability (AAI) & Cranio cervical instability (CCI) which is believed to have been caused by my neck being hyper extended during intubation for my surgery in 2017, i received this diagnosis just 5 days before finding out that I'm pregnant.

Instead of celebrating what should be one of the most exciting times in my life I'm cripplied with the realisation that potentially without the surgery that I need the time that I'm going to have with this tiny little miracle inside of me could be unfairly cut short by a condition that although is completely treatable with surgery the NHS still refuse to complete.

Having seen first hand just how difficult it is, not only to gain a diagnosis, but also how hard it is to obtain these life saving treatments, I felt I needed to try and do something because at some point, this archaic neglect for EDS patients needs to change.

I'm doing this for a number of my close friends who have now recieved their diagnoses and are now facing long battles to receive the treatment they so desperately need. I am also doing this for every EDS patient who truly deserves a voice but is too afraid to speak up as they are concerned that the NHS will not support them if they do.

This is wrong and we need to change it! Thank you for signing.

We are the EDS Army and we are knocking at your door!

Emily Bean 

You can follow my journey @: Positive.Potsie on Facebook, youtube & Instagram.

Thankyou