Today I had a chance to ask a question during questions to the Prime Minister

Connor lives in Hazelslade, UK, and lives with Ehlers-Danlos Syndrome (EDS), craniocervical instability (CCI) and Lyme disease.
EDS is a group of 13 genetic disorders of the connective tissue that can affect people in numerous ways.
CCI causes excessive motion between the skull and spine – a common complication in people with EDS, which often gets worse over time.

As I told the PM, Connor was once an active young man who enjoyed fishing and mountain biking in the Chase, but now he is confined to bed most of the time and afraid of something as mundane as a car ride 😞

The reality for Connor – and for many with his conditions – is years of fighting to get a diagnosis. Often they have to go to the private sector, and face minimal and fragmented NHS care.
EDS is barely recognized nationally within the NHS, so no clear treatment pathways exist. Patients often end up with rheumatologists who sometimes haven’t even heard of the condition 🩺

It is shameful that people like Connor have no choice but to raise money to be treated abroad.
In the fifth richest country in the world, with one of the most advanced health care systems, specialized EDS treatment should not be so rare.

After visiting Connor at home, I had the opportunity to meet with Ehlers-Danlos Support UK in Parliament 🤝🏻
We talked about how their small team provides tremendous support for people with EDS, funds intensive research and advocates nationally.
I will continue to support them as they campaign on behalf of thousands of people.

I am pleased that the Prime Minister has committed to meeting with the Minister of Health, along with our EDS organizations, Connor and myself 🙌🏻
I’ll keep you posted as soon as that takes place.