Laura Sylvester

Patient Leader

Hello there, I’m Laura Sylvester, a 26 year-old from U.K. who is a Petroleum Geoscientist, Patient Advocate, Founder of a registered charity, part-time completing a Masters degree at Imperial College London, whilst living with an ‘invisible’ illness that has caused me to undergo a series of life-saving brain and spinal surgeries in the last few years. My symptoms went unrecognised for more than a decade, until in August 2014 just before beginning my Masters degree, I was finally diagnosed with Ehlers-Danlos syndrome (Hypermobility, hEDS – a genetic connective tissue disorder) along with a number of other common co-morbitities and chronic conditions. Unfortunately, my diagnosis came too late because my condition had deteriorated to a point of becoming life-threatening: essentially, not only was my neck dangerously unstable, my brain was sinking through my skull, my spinal cord was tethered, and my brain was suffering from a lack of blood-flow. After exhausting the limited expertise available on the NHS, my family and I were faced with the huge financial burden and stress of having to empty our pockets and appeal to the public to fundraise for my life-saving treatment in the USA. To-date, at the age of 26, I’ve undergone a total of 7 brain and spinal surgeries in just three years. As a result of this life-altering experience, when I woke from my first neurosurgery in 2016, I wanted it to be put to good use to ensure that others did not have to suffer in the same way from a failure to diagnose EDS early - and this was the moment I founded the charity ‘Mind Body EDS’. Mind Body EDS strives to be at the forefront of making a difference every day to the lives of people with Ehlers-Danlos syndromes and their families. We confront EDS on all fronts: by actively spreading education and awareness (specifically at medical schools to the doctors of our tomorrow), the goal of our charity is to bring hope; by providing financial grants and support to EDS sufferers to enable them to access the limited EDS specialists in the UK, the goal of our charity is to bring relief; through supporting medical research, the goal of our charity is to bring resolution. Today I’m still undergoing intense rehabilitation from the extensive spine, brain and nerve damages I’ve suffered from. I’ve relearned how to read, write and walk again without sensation from the waist down after being told by specialists that it would be highly unlikely due to the severity of my condition. My story is far from unique. Like so many EDS sufferers, because my symptoms went unrecognised for so many years, my condition became life-threatening. Early diagnosis really does save lives. So in being a Patient Advocate and setting up Mind Body EDS my goal is to help others get the treatment they desperately need as soon as possible. My Instablog follows my medical journey of recovery, rehabilitation, treatment and management of living with a range of chronic illnesses whilst showing my patient advocacy work for Mind Body EDS. I advocate in a range of ways from being guest speakers at charity events and Galas, to medical schools and conferences, to governmental officials and influential politicians (such as the previous Health Secretary Rt. Hon Jeremy Hunt) advocating for them to create a diagnosis, treatment and neurosurgery pathway for EDS on the NHS. My online presence also gives an insight to my daily realities of the joys and struggles living with multiple chronic conditions, readjusting to ‘life’ and re-discovering my ‘path’ as a mid-twenty-some-year-old. I spend my time writing reflection accounts exploring perspectives to make sense of what life means to me now as a medical zebra warrior with the aim of sparking hope within others. I dream of a time where it is easier for doctors to diagnose EDS. I dream of a time when a patient’s condition doesn’t worsen to a point of becoming critically severe, until ultimately being diagnosed. I dream of a time when doctors have heard of this ‘not-so-rare’ connective tissue disease, being able to early diagnose and treat patients giving them the best chance at life. EDS is not a rare condition: the rarity is in the awareness and knowledge amongst the medical profession and general public. So being diagnosed correctly should not be rare. The charity I have created aspires to be 'a gateway of hope', to not just those of us with Ehlers-Danlos syndromes, but also for the future generations of zebras to come. I’m a true believer that helping a person may not change the world, but it can change the world for that person. Simply put, every life matters. Because just vocalising your beliefs isn’t enough to leave a mark. It’s whether you are brave enough to act upon them. You have to decide what kind of difference you really want to make. Small changes over time add up, and that to me, is what life is worth living for. I’m incredibly grateful for your support!

Location

Farnham , ENG

Nominations

Patient Leader Hero Healthcare Collaborator: Patient Best in Show: Instagram

Laura is the bravest person I know and despite the challenges of living with EDS she has made it her mission to raise awareness and support those who also have EDS - she has done this by setting up the charity MindBodyEDS which aims to educate about the disorder and has already given grants out to patients to support their needs.  — Rebecca

Despite her own problems with this horrible syndrome, Laura goes out of her way to help fellow EDS patients to thrive despite their diagnosis.  — Penelope

The most selfless, inspiration, determined soul who continues to advocate for us all in spite of her own daily unimaginable battles. A true hero.  — Sophie

Laura is a true inspiration, not only to EDS warriors, but to anyone who meets her in real life or via social media. Her optimism and 'glass-half-full' attitude whilst sharing the raw truths of her life is hugely humbling and motivational. She is such a relatable, determined, passionate Instagram influencer to all and is so deserving of this award.  — Rochelle

Laura Sylvester

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