Samantha Smith calls for greater education on Ehlers-Danlos Syndrome

Samantha Smith

After two unsuccessful neurosurgeries, Samantha Smith is calling for greater education of Ehlers-Danlos Syndrome (EDS), one of the many conditions which affects her.

Mother-of-two Sam, who underwent two operations in Washington with a leading surgeon over the summer, was diagnosed with EDS in December 2016, a genetic condition where connective tissue holding the body together is faulty and too weak.

Whilst Sam has seen some benefits from the surgery, they unfortunately failed to stop her neck from dislocating, and she now requires a third operation which will further restrict her movement, estimated to cost in the region of £100,000. This is on top of a further £50,000 to cover the costs of the most recent operation, as unlike the UK, the costs of surgery stateside means a bill of tens of thousands of dollars is racked up.

Sam, from Smithy Bridge, explained how even the health-care professionals have a limited understanding of the disorder: “I switched GPs and before I left my first appointment, she told me she was going to learn as much as she could about EDS for me and that she was going to help me. That is the first time in ten years that I have had any health person say that to me. That gives me a lot of hope because I can’t keep managing my own care.

“Even in the US, I was in the high-dependency units and I was telling the nurses what I need and how to medicate or treat me and educate them on my condition. It has taught me that we need to do everything we can to save the NHS or we’re in big trouble.

“The only thing keeping me going right now is the knowledge that I have to change the healthcare system for EDS sufferers over here. I do have a plan with the backing of my surgeon and a professor over here and the BBC are very interested in it. I am working on that in the background, which is more like a research project at this stage, until I can take it forward to our government.

“The BBC are also looking at doing a couple of educational programmes. It will not support my fundraising, but it is important to raise awareness about the condition.”

The psychotherapist continued: “Although EDS is considered a rare condition, it is not. It is just massively misdiagnosed. If it was diagnosed correctly and the right knowledge and updated information was there, we would have that support and be able to stay in work: lives would be saved. That is my focus, mainly for my children’s future because it is a genetic condition. I need to know I have done everything possible.

“With the amount of people worldwide and locally in England who have reached out to me, it is just too common to be rare. There are so many reaching out to me who have not been diagnosed but relate to everything described, and they are asking for advice and support with it. It is wonderful, but that support should be there.

“We all have connective tissue, ultimately they should know what happens when it is faulty.”

Samantha is also close to finishing her book, which she began writing whilst abroad for her medical treatment. She is currently trying to find a publisher.

“It is a ‘how to’ guide on living with rare and chronic conditions, but because I am a therapist, it is around a therapy model so whilst it has my experiences, it has therapy worksheets and guides for people to work through each chapter and each problem that chapter discusses.

“I am looking forward to getting that out there and hopefully making a positive out of it. I have also been asked to write for a second book, about EDS, so I am hoping that publisher might want to take this on too. It is really early days yet, but that will be next year.”

Types of EDS

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. 

The race to Save Samantha

Rochdale Online has closely followed Samantha’s journey since April, 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:

https://www.rochdaleonline.co.uk/news-features/138/community-news/109403/samantha-smith-in-desperate-rush-to-raise-%C2%A3150000-for-life-saving-surgery

https://www.rochdaleonline.co.uk/news-features/news-archives?type=News&searchtype=Phrase&Criteria=samantha+smith

Over the past six months, Sam hit national press, television and radio, and with the help of the public, she raised enough for the surgery to go ahead.

However, she still needs your help to pay off the outstanding amount from the second surgery and raise enough for a third operation on her neck.

https://www.rochdaleonline.co.uk/news-features/2/news-headlines/112770/samantha-smith-needs-to-raise-another-%C2%A3150000-for-third-surgery

Find an event to help Samantha:
http://www.rochdaleonline.co.uk/events/search?searchtype=text&searchvalue=samantha

To donate, visit:
www.youcaring.com/samanthasmith-788861

PayPal: https://www.paypal.me/savesamantha

Or transfer donations to:

Name: Save Samantha
Account No: 90266248
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