Brave mother of two Samantha Smith has created a raw and honest documentary, sharing details of her heart-breaking journey with the genetic disorder Ehlers-Danlos Syndrome (EDS).
Sam has created the 37-minute insight with The Standout Company to share how EDS, where connective tissue holding the body together is faulty and too weak, and her other medical conditions affect her from day to day.
Despite her own personal fight, Samantha is still campaigning to raise awareness of the genetic disorder which she says is lacking in the UK.
Due to several medical conditions, including EDS, psychotherapist Samantha from Smithy Bridge, whose brain and spinal cord were being crushed under the weight of her own skull, has had to undergo lifesaving neurosurgery more than once – and still requires further operations.
EDS affects around one in 5,000 people worldwide, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. It can affect different types of connective tissues that provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
The NHS lists four types of EDS, although there are understood to be as many as 13 varieties.
According to the NHS, several types of EDS may share some symptoms, including: an increased range of joint movement (joint hypermobility), stretchy skin, fragile skin that breaks or bruises easily.
Sam, 32, recently revealed that she is once again fighting for her life after three extensive surgeries to stabilise her head and neck did not have the success rate anticipated.
Samantha, who urgently requires another fusion surgery, also revealed that due to her various medical conditions, her body is deteriorating so rapidly, she now requires brain surgery as her brainstem is falling out of her skull.
Approximately £77,000 has been donated towards Sam’s next lifesaving operations so far, which are once again not available in the UK and will cost over £100,000.