BE PATIENT
BE PATIENT
"I have spent most of the last 2 1/2 years desperately ill in hospital in Germany, with my Mum, pursuing my medical mystery case.
Medical advancements in my case have led to pioneering new surgeries and treatments which are already changing lives.
Loads of you have suggested I set up a GoFundMe but I have always felt conflicted about this, as so many of my audience are patients themselves, with their own really challenging stories. I also turn down all paid brand adverts on my site, as I do not feel it is right to use my page in this way, when so many of you who follow me are also in vulnerable positions.
We are resolute we are finding a way to stay in Germany, until I reach my medical breakthrough and we not only solve this for me but for so many seriously ill patients around the world.
Of course, lots of things have had to happen behind the scenes, financially, to enable me to me to continue with my investigations and treatments in Germany.
Can you help?
By purchasing just ONE 'Be Patient' book at £14.75 you have the power to create change,
both in my own life, my future voice and mission and the lives of so many patients.
I am so very grateful for your support!"
Can you help Tilly on her medical journey?
A Message from Tilly
Tilly Rose
Tilly Rose is a patient advocate and author of memoir ‘Be Patient’ about her 20 years behind the hospital curtain.
Tilly shares every stage of her patient journey in ‘chapters’ on her Instagram @thattillyrose to her platforms of over 120k followers.
This is all part of her wider mission to impact patient care.
We are ALL patients at some point in our lives and whether we are fighting for ourselves or our loved ones patient care is something we should all be invested in.
How can YOU help?
Buy ONE ‘Be Patient’ book
* Read about the patient experience.
Buy TWO ‘Be Patient’ books
* Spread the patient voice!
* Pass a copy of ‘Be Patient’ onto fellow patients, their families, healthcare professionals, doctors, nurses, physios, pharmacists, occupational health practitioners, send it to your MPs, policymakers, medical school lecturers, researchers, health influencers, authors, publications or anyone who can impact change!
Buy FIVE ‘Be Patient’ books
* Impact change!
* Share your ‘Be Patient’ books with fellow patients, their families, healthcare professionals, doctors, nurses, physios, pharmacists, occupational health practitioners, send it to your MPs, policymakers, medical school lecturers, researchers, health influencers, authors, publications or anyone who can impact change!
* Leave your books somewhere impactful - your GP surgery, hospital waiting rooms, clinics, book clubs, community groups, office staff rooms, leave it on the bus, tube, donate a copy to your local café, library or hand it directly to your doctor or nurse, take it to med schools, medical conferences, charity events, training days!
Maybe you could stick a little post-it on the front of your book, saying why you think the person who receives it or finds it should read it!
Buy TWO ‘Be Patient’ books
Be sure to tag @thattillyrose in your social media posts to show us where you have shared your copies!
* Spread the patient voice!
* Pass a copy of ‘Be Patient’ onto a friend, fellow patient, their families, healthcare professionals, doctors, nurses, physios, pharmacists, occupational health practitioners, send it to your MPs, policymakers, medical school lecturers, researchers, health influencers, authors, publications or anyone who can impact change!
We ship to the UK & around the globe!
Through supporting the campaign all UK customers will receive a
limited edition signed copy of ‘Be Patient’ with a little message from Tilly!
All prices include UK delivery
International customers can purchase copies of ‘Be Patient’ from Blackwell’s with shipping included in the cost of the book.
Share a comment and let us know what you plan to do with your copies of ‘Be Patient’!
My Story
How can YOU help?
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.
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.
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.
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.
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.
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.
Medical advancements in my case have led to new pioneering new surgeries and treatments which are already changing lives.
After deteriorating again in England earlier this year, unable to access any medical support, I returned to my team in Germany.
I have now been desperately unwell as an inpatient in hospital for the last four months.
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 chronic illness patients around the world.
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!
This has all kept me going. I feel my experience is for a bigger purpose.
My book ‘Be Patient’ is part of my wider mission to impact patient care and to spread the patient voice.
I really do believe storytelling has the power to change the world.
So many of you have kindly kept asking what you can do to help ‘Team Tilly’ 💛.
Loads of you have suggested I set up a GoFundMe but I have always felt conflicted about this, as so many of my audience are patients themselves, with their own really challenging stories. I also turn down all paid brand adverts on my site, as I do not feel it is right to use my page in this way, when so many of you who follow me are also in vulnerable positions.
We are resolute we are finding a way to stay in Germany, until I reach my medical breakthrough and we not only solve this for me but for so many chronically ill patients around the world.
Of course, lots of things have had to happen behind the scenes, financially, to enable me to me to continue with my investigations and treatments in Germany.
By purchasing just ONE 'Be Patient' book at £14.75 you have the power to create change, both in my own life
my future voice and mission and the lives of so many patients.
FOLLOW @thattillyrose on Instagram where I share 'chapters' in my captions detailing every stage of my life behind the hospital curtain.
I am so grateful for your support!
⭐⭐⭐⭐⭐
An incredible, honest and truly inspiring book
“Be Patient” is an absolutely amazing read. Tilly is such an inspiring lady, and the honesty and courage with which she shares her experiences make this book incredibly powerful.
What makes Be Patient so special is that it gives you a true insight into life behind the curtain — the side that people don’t always see or understand. Tilly brings that hidden world to life with such openness and authenticity that you feel as though you are right there with her. There are moments that make you think, moments that move you deeply, and others that stay with you long after you’ve put the book down.
Tilly’s strength, warmth and personality shine through every page. This isn’t simply a book telling someone’s story; it’s a book that opens your eyes and gives you a greater understanding of experiences that are so often hidden from view.
I came away from Be Patient with enormous admiration for Tilly. She is a genuinely inspiring lady, and sharing her story so openly will undoubtedly help and inspire others.
An unforgettable, eye-opening and beautifully honest book. I cannot recommend it highly enough. Five stars simply aren’t enough!
We’re inspired, not just by your tenacity to swim so enduringly against the tide, but your ability to shout loud and emotionally save hundreds of drowning people as you do so, while mobilising the people who have the influence to do something better. This is exactly what our charity is built upon and we can’t think of a better way to collaborate than support your quest by purchasing as many of your books as we can fundraiser for, and gifting them to both patients, their advocates, and the professionals we see every day. Maybe when you are physically thriving you will stand next to us on a platform to address hundreds of them, and people dealing with complex conditions that deserve bespoke inquisitiveness and action to resolve. Thank you, and heal well. Lindie and the WiA team. x
Praying for sunshine and flowers in this difficult time. You are amazing and the help you bring to others is phenomenal I pray your baby heals and you marry fiance and enjoy the simple things in life once again.
Much love and prayers from the USA kathy
I bought it for myself. Then a bought two more for my family members and during a 7 month stay in hospital, NJ fed in agony and being an eds sufferer with chronic gi issues kidney and bladder issues as well as CCI and jugular vein compressions diagnosed in the UK (privately) I recently gave me copy to a top gastro during a consultation explaining why someone like her should read it. I bought them all from Amazon, I wish I’d known I could buy them here so that the money would go directly to Tilly but I promise to keep talking about the book to as many people as I can 🌼
I bought BE PATIENT on kindle when it first came out and LOVED it! Seeing your recent posts, it sounds like you need a boost so have bought the physical book for friends and colleagues that I know will benefit from your experience and advice - thank you so much (and well done!) for managing to write a book whilst being so poorly! I’ve been following you for a while now and really hope that your doctors can come up with a plan to get you back on track as soon as possible - it’s the least you deserve after so much pain and anguish over the years. Keep going Tilly - you have so much support and love from around the world and are making SUCH a difference!
Praying so hard for you Tilly, and Team Tilly, and praying that the amazing team of medical professionals supporting you find the same courage, strength, and hope, that you have shown so they can find the answer and cure that will bring you the life that you deserve and have waited so patiently for. You are a light for so many who feel unseen and unheard in the patient world. Stay strong and continue to believe. Sending you all the positivity, prayers, and hope! 🙏🏻🙏🏻🙏🏻
I’m a physio in Alberta, Canada and I bought a copy to read and share with my colleagues. In my >20 years of practice I’ve treated many zebras who don’t fit in neat diagnostic and treatment check boxes. In fact, they’re my favourites because I learn so much from them.
Thank you for all you do to share your story and create change. Sending love and hope ❤️🩹
Tilly, you’re in my thoughts daily, and I check your IG regularly to see how you’re doing. I hope these most recent tests and procedures that have been bringing you so much pain bring about answers and breakthroughs and change for you and so many others with EDS. ❤️
Tilly Rose, you are truly amazing! I’m retired in Europe but when I return to the UK this Autumn I will leave one of the copies of your book at the Cambridge Uni School of Clinical Medicine. One at the MRC LMB and one at the Astra Zeneca building. The other copies of BE PATIENT that I ordered are for me and a friend. I follow you on insta and you an incredible inspiration . Sending love and all best wishes for your recovery.
Do you have an audio book version at all? But we support you Tilly and have followed you for a long time and you are such a real genuine and positive role model to the community. Never forget the difference or impact you've made and are making every single day just by being you and sharing your story. All our love to not just you but your whole family and medical team too and know you are loved and being cheered on not just from the UK but all round the world 🙏🏼❤️