Be Patient – My EDS Story by Tilly Rose

‘In 1940, medical researcher Theodore Woodward coined the phrase, ‘When you hear hoof beats, think of horses, not zebras.’ The odds are that patients have common diagnoses rather than rare ones. On day one, I got Theodore Woodward’s vibe; but 11 years down the line, he’s totally screwed me over. I am now facing the hard truth that I am 100 per cent zebra. This comes with another hard truth: most medics prefer horses.’

(Quote from my upcoming book, Be Patient).

When I became seriously ill as a teenager, with a plethora of unexplained symptoms, I was sent from -ologist to -ologist like a hot potato. I spent years doing the rounds of waiting rooms, A&E departments and hospital wards. When the doctors couldn’t find the answer, they passed me on. At one stage in my journey, I was diagnosed with hypermobile Ehlers-Danlos Syndrome but it was never presented to me as being accountable for my symptoms. I’d always been pretty flexible and simply thought I was ‘a bit bendy’.

My medical situation reached a crescendo in 2022 when I collapsed on the stairs at home and could no longer walk.

I began having gruelling metabolic and neurological attacks that no one could explain. I had a list of growing symptoms affecting every part of my body; everything from PoTS, to gastroparesis, muscle convulsions and kidney dysfunction. I was certain I couldn’t have this many separate things wrong with me; surely there had to be a condition that explained them all. No one considered the effects of EDS or its co-morbidities.

‘I am trapped in a system that relies on putting people in boxes. Bodies aren’t made for boxes.’ (Quote from Be Patient)

After almost 3 months in hospital, I was about to be discharged with no diagnosis, on ‘comfort care’. At my most desperate, I decided I had nothing to lose by posting on my Instagram @thattillyrose and asking the world for ideas. The world answered. Medics, nurses, PhD students, professors and patients from all over the world got in touch with test suggestions, diagnoses ideas and treatment options.

My mum spent night and day over the next year researching every suggestion on the list. There was one idea she kept returning to: vascular compressions.

In November 2023, this ultimately led me to Germany where I was diagnosed with multiple vascular compressions. Over the last year I have undergone three lifesaving vascular compression surgeries. Instagram saved my life!

Whilst in Germany the medics once again identified my hypermobile EDS. I have since learnt that vascular compressions can be associated with Ehlers-Danlos Syndrome.

I’ve now met so many other vascular compression patients. One thing most of us having in common is we have Ehlers-Danlos Syndrome. Due to our connective tissue being too ‘stretchy’, organs and veins can end up shifting into the wrong places, preventing blood from flowing properly and organs from functioning. I’ve met patients with a similar constellation of symptoms including; PoTS, gastroparesis, bladder and kidney dysfunction, neurological issues, mast cell activation. I’ve now seen there are tangible solutions and surgeries out there offering hope for EDS patients but more information needs to be shared about them.

I share ‘chapters’ on my Instagram @thattillyrose on my 20 years of life as a patient.  My story also inspired me to launch @thatpatientcollective where patients with undiagnosed conditions/rare symptoms can share their experiences on our stories to our patient community who can offer ideas and suggestions of routes to pursue. I feel patients supporting patients in the rare community is the way forward!

This has all led to me being offered a publishing deal for my upcoming book Be Patient, about my desperate search for a diagnosis (ultimately underpinned by EDS), against the backdrop of a funny, heartfelt and, at times, shocking insight into patient life.

Be Patient is being published on 17^th April 2025 and is available to pre-order now: https://linktr.ee/bepatientbook?fbclid=PAZXh0bgNhZW0CMTEAAaat4JBIVRFlNZE1HEFaFpo_x7n0RCYh5R5n1zIzmoiLZe3ZJDLQtM57KEU_aem_UT_41wZZ5Bpu6vRlWHd4MQ

Be Patient is part of my wider mission to impact patient care and to give patients a voice.

@thattillyrose

@thatpatientcollective