Samantha Smith calls for government to do more for Ehlers-Danlos patients

Date published: 12 July 2018

Samantha Smith has launched a petition calling for the government to do more for patients with genetic disorder Ehlers-Danlos Syndrome (EDS).

Due to EDS, where connective tissue holding the body together is faulty and too weak, plus other medical complications, mother of two Samantha, from Smithy Bridge, has had to undergo lifesaving neurosurgery more than once – and still requires further operations.

She said: “I have auctioned a petition for the government to take notice of the complete lack of professional healthcare education, research and support for patients like myself with Ehlers Danlos Syndrome.  

“At present, I am fundraising for my fourth lifesaving neurosurgery in America within 12 months. This surgery is time sensitive. The need is great. I am one of many people unable to access any knowledgeable, trained or understanding healthcare professionals to give me back the quality of life that this rare, genetic condition has stolen from me, and threatens to steal from my children. 

“Basic care and treatments are researched and proven effective, but doctors are not currently trained or offered CPD to provide EDS patients with any care pathway. 

“If our physios, GPs and specialists had access to training to manage EDS patients, then disabling, dangerous and agonising damage to our bodies can be minimised and/or completely avoided. 

“It’s time for rare to get more care. Please sign, publicly share and support this petition for change.”

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.

According to the NHS, there are several types of EDS that may share some symptoms, including: an increased range of joint movement (joint hypermobility), stretchy skin, fragile skin that breaks or bruises easily.

The NHS lists four types of EDS - the most common type, Hypermobile EDS plus rarer types such as classical EDS, vascular EDS and kyphoscoliotic EDS - although there are understood to be as many as 13 varieties. 

Rochdale Online has closely followed psychotherapist Samantha’s journey since April 2017, when we broke the news of her desperate race to raise £150,000 for lifesaving neurosurgery, after her brain and spinal cord were being crushed under the weight of her own skull, due to a number of medical conditions such as EDS, unstable vertebrae and lack of connective tissue support between her skull and spine.

Samantha underwent three lifesaving operations that summer, but despite a high success rate, the surgeries failed to stabilise her upper vertebrae and head as expected.

Samantha was later given the devasting news that she will require another extensive and aggressive operation that will restrict all movement in her head and neck.

Once again, the £100,000 surgery is not available in the UK.

There is also the devastating possibility the mother-of-two, whose joints still continue to dislocate all over her body, will require a full spinal fusion, further removing all movement from her spine, head and neck.

To sign the petition, visit:

Donations can be made via:


Or transfer donations to: 
Name: Save Samantha 
Account No: 90266248
Sort Code: 20-45-45

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