A letter from our Founder
My symptoms went unrecognised for more than a decade, until four years ago when I finally was given my diagnosis of Ehlers-Danlos syndrome (Hypermobility, hEDS) along with a number of other common comorbitities. 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 causing serious life-threatening damage.
Living without an accurate diagnosis for the majority of my life has put a tremendous strain on my whole family. With a lack of funding and expertise available on the NHS or elsewhere, my family and I were then faced with the huge financial burden and stress of having to empty our pockets to seek the limited EDS specialists in the UK and eventually had we had no choice but to go abroad to the USA for life-saving treatment. To-date, at the age of twenty-five I’ve undergone a total of six brain and spinal surgeries in just under two 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 suffer in the same way from a failure to diagnose EDS early. The result has been the development of the Mind Body EDS charity.
The ongoing suffering amongst patients is real and it is a problem on a worldwide scale. Due to lack of awareness, knowledge and understanding in the medical profession and general public, patients go unbelieved for years and even decades, being told “it’s just all in your head”. They see doctor after doctor, getting misdiagnosis after misdiagnosis, only making their symptoms worse, causing irreversible damage to the body. When will this ignorance end?
Timely early diagnosis and the provision of appropriate care in order to manage the condition is imperative so that the proper course of treatment, therapy and lifestyle adjustments are made before the condition becomes disabling or life-threatening. Early diagnosis and treatment can have a hugely positive impact on the lives of sufferers and their families - and it is with this aspect of care for the EDS patient that our charity is concerned.
Living with a known diagnosis is better than an undiagnosed one. This truly determines the type of outcome and quality of life an EDS patient is faced with.
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.
Even though no two EDS individuals are ever the same, the one thing I have witnessed amongst patients that is similar are the characteristics of unity, resilience and hope. Without these three vital characteristics, our voices would never be heard or believed.
Invisible illness is the very definition of hell. Ehlers-Danlos syndromes are a steep learning curve, and the only way in which to climb, is to have hope for what the future could bring. Because there simply is nothing else. There is no cure.
In actively spreading education and awareness, the goal of our charity is to bring hope.
By providing financial grants and support to EDS sufferers, the goal of our charity is to bring relief.
Through supporting medical research, the goal of our charity is to bring resolution.
Mind Body EDS hopes 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 and live by this famous quote by author Paul Shane, "helping one person might not change the world, but it could change the world for one person."
So, it's your turn. Help change the world for those who are impacted by EDS and contribute to their life-changing diagnosis, treatments and managements of their condition by offering your kindness and support in giving today.
It’s time for us to be heard. It’s time for us to be believed. United, we stand together and ask you to join us in this battle together, making our invisible, visible.
Founder of Mind Body EDS