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 my 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 currently no treatment pathway in the UK for EDS patients with CCI. 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 overseas. 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