A YOUNG woman from Farnham has returned home after surviving eight months of pioneering treatment for the degenerative muscular condition Ehlers-Danlos syndrome (EDS) - and even a near-miss with a tornado - in the USA.

Laura Sylvester, a 23-year-old former pupil of South Farnham School and alumni chorister with Farnham Youth Choir, initially planned to spend just two months in Washington DC after travelling to undergo life-saving neurosurgery in January.

As reported in The Herald earlier this year, her initial operation successfully created stability in her neck where the disease had almost completely wasted away her muscles, and reduced the risk of fatally damaging her brain stem.

However, after several further life-threatening complications were detected, Laura eventually underwent a total of four major operations between January and June including brain surgery before returning home in August.

She still suffers from an array of symptoms and faces a lifetime of therapy and check-ups in the States - but her time in the US has given her hope for the future and Laura has expressed her deep gratitude to all those who have supported her and helped fund her treatment.

“It’s quite surreal being back,” said Laura, whose mum, Jayne, spent the entire eight months at her bedside. “You get used to a city and another area, and a routine, and then suddenly you’re back in the small streets of Farnham again.

“It was quite overwhelming - my dad and sister and a good family friend of ours picked us up at the airport and I think only then it settled in my mind how much I’ve gone through throughout the eight months.

“While I was out there I was just thinking about what was next instead of really understanding what I was going through, but all the emotions came flooding out when I arrived back home.”

Laura was diagnosed with EDS with Postural Tachycardia Symdrome, an incurable and potentially fatal disease that causes the connective tissue throughout her body to be extremely stretchy and easily breakable, in August 2014.

She was soon forced to postpone her master’s degree at Imperial College London to seek treatment and, with doctors in the UK unable to meet her complex health needs, Laura set her sights on highly-specialised EDS neurosurgery in the USA.

With the help of the Farnham community, in just a month she raised the £75,000 needed for the pioneering treatment by America’s foremost EDS expert Dr Fraser Henderson and flew to Washington DC in January this year.

But following her first operation on January 13, Laura’s neurological symptoms continued to worsen and she underwent two further ops to release the stress on her spinal cord on February 17 and April 12.

Again these failed to ease her symptoms and Laura - previously an active, sport-loving university student - lost much of the sensory function in her lower limbs and left arm, and was told she may never walk again.

She also lost the ability to talk properly or read, lost control of her bladder, her short-term memory deteriorated and she suffered constant headaches on top of the chronic pain she had experienced since her mid-teens.

“Everything was just going wrong and I got very anxious and worried, thinking am I going to be able to read again, am I going to be able to study, am I going to be able to get through my masters?”, Laura continued.

“It got to a point where it just felt like everything was deteriorating and mentally I lost the ability to think. I didn’t have a clue what was going on with my body and it felt like everything was breaking down.

“I had multiple breakdowns and would say to mum, ‘why is this happening to me, I don’t want to live anymore’.

“I just couldn’t take it because it was so much to deal with and I thought this is going to affect my whole life, it’s going to change everything and I don’t want it to.”

The breakthrough eventually came when Laura was referred to a vision therapist, who noticed her eyes weren’t working together and had the revelation that her neurological problems may be rooted in the brain.

Laura was sent for an MRI scan, which revealed a rare blood clot in the left side of her brain that, although requiring her most serious operation yet, finally explained her multitude of symptoms.

She was dispatched to the University of Virginia, a 120-mile car journey away, where an angiogram and lumbar puncture confirmed the diagnosis and revealed much higher than expected blood pressure surrounding her brain, putting her at risk of a fatal stroke.

The solution was yet another pioneering technique to fit three stents - a metal tube each the size of Laura’s index finger - into three veins in the left side of her brain to improve her circulation.

Very few EDS patients have undergone this surgery - and at the time Laura was only the 54th patient operated on by the University of Virginia’s Dr Kenneth Liu, the only neurosurgeon in the world performing this type of surgery on EDS patients.

She underwent the procedure on June 21 and awoke with a terrible headache and severe nausea, followed by numerous seizures as her brain struggled to come to terms with the stents. However, once these relented Laura soon noticed something remarkable.

She said: “I remember Dr Liu doing some tests on me, and everyone telling me how bright my eyes looked. They were sparkling turquoise and I remember just being able to think clearly for the first time for what seemed like years.

“It was almost instantaneous. Although I still had a headache, it was somehow different to the headaches that I’ve had since I was about 15 years old. I was able to talk in sentences again and it just felt like someone had pressed the reset button.

“The physician started doing tests on my legs and I remember him scratching the bottom of my foot and it actually hurt! I’d had numbness in my legs for over a year and hadn’t felt them at all since February, so it felt like a miracle.

“Honestly, I hadn’t felt that normal ever in my life, so it was really overwhelming.”

Following surgery, the majority of Laura’s symptoms significantly reduced, she could soon walk again unaided and in August she was finally strong enough to fly back home where she was reunited with her dad Kevin, sister Rochelle and her two golden retreivers.

She must return to DC in November, and then annually, for check-ups by her surgeons, and hopes to resume her masters in petroleum geoscience some time next year.

However, if Laura’s experience has taught her anything it’s to take one day at a time, and for the time being, she is just enjoying being at home with her family, friends and two dogs Chico and Rusty.

Laura added: “I used to have a five and 10-year plan for my future - of what I wanted to accomplish, where I was going to be.

“This has really made me realise that there’s no point stressing about what might happen months ahead because you don’t know what’s going to come around the corner. Living through that experience has really taught me to stay in the now, and what will be will be.”

Incredibly, Laura and her family retained their sense of humour throughout her gruelling treatment - and this came to the fore just days before her brain surgery when Laura and her mum came face to face with a tornado.

Laura said: “We were driving back from Virginia through a little town called Fredricksburg when I got a text message on my US phone warning us that a tornado was near-by and to take shelter. I was a bit puzzled but looked up to the left and there it was - a tornado within a mile of us!

“We turned around and took a huge detour to get back to DC, and I said to mum, wouldn’t it be hilarious, after all this time and the fundraising, all this money and surgeries, to then get sucked up by a tornado.”

Laura has also kept an online blog, https://mind

bodyeds.me, throughout her treatment and she has received countless messages of goodwill from both EDS patients and non-EDS patients, all inspired by her remarkable journey.

This, she said, has played a vital part in her recovery and she has now turned her attention to raising awareness of EDS and improving treatment of the “invisible disease” in the UK, where it is thought as much as one per cent of the population now suffer from EDS.

Laura continued: “I saw so many other EDS patients out there who were struggling just like me but had completely given up, and I remember thinking I don’t want to be like that, I want to try and get my life back together and be an advocate for others.

“I just thought I’ve got to get through it, there’s no other way out so I’m just going to have to deal with the pain. I’m going to have really bad days and really good days, days of strength and days of weakness, but I know that I have people who love me and I’ll get through it.”

Laura has also received extraordinary support financially from people all over the world, raising a staggering £190,000 to-date through public donations from individuals and groups across the Farnham area and further afield.

However, her last surgery alone cost £130,000 and she has now set a target of raising £300,000 to help cover the costs of her future care. For more information or to donate, visit the website www.youcaring.com/laura-sylvester-483048.