Help Connor in his battle against Craniocervical Instability and Ehlers Danlos Syndrome

Hello everyone,

My name is Connor Edwards, and I am a 30-year-old individual from the UK.

Today, I am reaching out to you with a heavy heart and immense hope for your support.

Unfortunately, I have been diagnosed with a genetic disorder

called Ehlers Danlos Syndrome (EDS). This disorder is causing all of body’s connective tissues - my skin, tendons, ligaments, blood vessels, internal organs, and bones - to weaken, and is incredibly painful. Ehlers Danlos Syndrome can also lead to comorbid disorders (conditions that develop as a consequence of the underlying disorder). One of these conditions is called Craniocervical Instability (CCI). There is no treatment pathway for CCI on the NHS, and limited support for EDS.

My MP Josh Newbury raised my case to the Prime Minister Sir Keir Starmer earlier this year:

Due to the lack of NHS support I have no choice but to appeal to the general public in hope of raising £66,000 for private surgical treatment abroad. For a cost breakdown please scroll to the end of this page.

Why is the surgery not available on the NHS?

Currently the NHS are in the midst of conducting a study using upright dynamic MRI imaging to access the presence of craniocervical junction abnormalities in patients with hypermobility spectrum disorder or hEDS (hypermobility Ehlers Danlos Syndrome). This study might one day lead to larger surgical trials that would help deliver improved care to highly disabled patients. However, when this study is expected to conclude, and whether it will lead to surgical trials in the UK, is unclear.

Some years ago, world renowned CCI expert neurosurgeon Dr Fraser Henderson was invited to the UK to offer his expertise and assist UK neurosurgeons in a trial study. Sadly, the study didn’t go ahead and concrete reasons as to why this was the case are unknown.

Why is the surgery not available privately in the UK?

A small number of CCI fusion surgeries for EDS patients have been performed in the UK in the private sector, but currently there is no provision privately or in the NHS.

Due to the above UK patients have no clear treatment pathway. If conservative measures such as physio, pain relief, and pain management have failed to work there are no other options available.

Craniocervical Instability has robbed me of my independence. I cannot even tolerate sunshine, light or sound without feeling pain. I am afraid my body is giving up.

I am wholeheartedly appealing for your assistance and contributions to help me reach my fundraising goal. Your kindness will play a significant role in helping me receive the treatment I desperately need. Please, join me on this challenging journey and help me spread awareness about the hell that is Craniocervical Instability.

No amount is too small. Every single contribution is hugely appreciated. Please consider donating and sharing my story with your friends, family, and social networks. Together, we can make a difference!

Connor x

Cost breakdown for surgical care in Barcelona, Spain:

TOTAL: 75,000 € (£66,000)