My medical situation reached a crescendo in 2022, when I ended up in a London hospital with symptoms affecting every system in my body. After almost 3 months, I was about to be discharged with no diagnosis, on palliative care. At my most desperate, I posted on my Instagram @thattillyrose and asked the world for ideas. The world answered. 

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Medics, nurses, PhD students, professors, patients and their families from all over the world got in touch with test suggestions, diagnosis ideas and treatment options. It restored our faith in human beings. 

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My mum, who had already spent years devoted to being my own personal medical detective, spent night and day researching every suggestion on the list. There was one idea she kept returning to. 

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In November 2023, this ultimately led us to Germany, where I received a diagnosis of multiple vascular compressions caused by underlying hypermobile Ehlers-Danlos Syndrome. I went onto have four major surgeries. These surgeries saved my life.

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However, it became evident there was still an underlying problem with blood flow in my body. Here in Germany, I found a team of medics with very clever minds and very big hearts who have not seen my complex case and deemed it to be ‘impossible’ but have pursued answers and worked with with my mum and me, as a team of ultimate medical detectives. 

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By becoming the big ‘experiment’, I have said yes to every medical offer that has come my way. This has involved undergoing rounds of gruelling tests, procedures, trial treatments and operations. Every experiment has taught us something new and brought us closer to the truth. 

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Medical advancements in my case have led to new pioneering new surgeries and treatments which are already changing lives.

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After deteriorating again in England earlier year, unable to access any medical support, I returned to my ‘engel’ team in Germany. 

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I have now been desperately unwell as an inpatient in hospital for the last four months.

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My doctors are continuing to relentlessly pursue answers and we now believe we are on the cusp of a medical breakthrough that not only has the potential to save and change my life but also thousands of chronic illness patients around the world. 

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So many of you have kindly kept asking what you can do to help ‘Team Tilly’ 💛. We’ve been truly touched by the offers of practical support, financial assistance, kind gifts sent to the hospital and the abundance of heartwarming messages from patients, their families and perfect strangers. 

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Our go-to is to say there is nothing anyone can really do but then I got thinking… maybe there is ONE thing! 

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How can you help?

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I am inundated with messages @thattillyrose from patients and their families telling me how sharing my own story has validated their daily reality that is so often hidden from the outside world. My platforms have also led many patients to pursue and receive their own lifechanging diagnoses. I have met many of these patients at the hospital in Germany and seen how by sharing my story, they have been given a second-chance at life!

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This has all kept me going. I feel my experience is for a bigger purpose. I really do believe storytelling has the power to change the world. 

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My book ‘Be Patient’ is part of my wider mission to impact patient care and to spread the patient voice. 

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So, I realised recently there is one thing you could do to help…

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Help me spread the patient mission by purchasing a copy or a bundle of ‘Be Patient’ books! 

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Just one copy has the power to impact change. 

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If you have already read ‘Be Patient’, then my ask is that you purchase one more to pass onto a friend, fellow patient or loved one. 

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Or you could purchase one of our book bundles and leave ‘Be Patient’ somewhere impactful - hand it to your GP, leave a copy in your hospital waiting room, share with your book group, send it to your MP!

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The reality is we are ALL patients at some point in our lives. It is one experience none of us can escape, so whether we are fighting for ourselves or our loved ones, patient care is something we should ALL be invested in!