HCMC hospital operates on Marfan syndrome patient - VIETNAM

Dr Hồ Nhựt Tâm, head of Trưng Vương Hospital’s spinal department, talks about symptoms of Marfan syndrome that parents should watch out for.

Doctors at Trưng Vương Hospital in HCM City have performed their first ever surgery to reduce the curvature in the spine of a patient with Marfan syndrome.

They said the patient, a 15-year-old girl, suffered from scoliosis caused by the syndrome, a genetic disorder affecting connective tissues which play an important role in the body’s growth.

She suffered from a 69-degree curvature of the spine, which they reduced to 19 degrees.

According to the patient, she had been diagnosed with scoliosis during a routine health examination at school when she was 13.

She was prescribed a back brace to stop the scoliosis from worsening but failed.

At a press briefing at the hospital yesterday, Prof Võ Văn Thành, a consultant at the hospital, said patients with serious curvature of the spine should not be made to wear a back brace.

“A surgery was needed. When she was brought to the hospital, doctors at the spinal unit decided to perform the surgery.”

Without it, the patient’s heart and respiratory organs would have been affected and she might not have survived to 30, he said.

The use of advanced equipment meant she did not bleed profusely during the surgery, he said.

Dr Hồ Nhựt Tâm, head of the hospital’s spinal unit, said the surgery was done on September 26 and the patient is recovering well and would be discharged next week. She would be examined periodically for the rest of her life, he said.

Nearly 1 in 5,000 people around the world have Marfan syndrome, but there are no official statistics on its incidence in the country, he said.

According to the US-based Marfan Foundation, some people suffer from symptoms at birth or as young children, including some serious ones like heart vessel enlargement.

Others have fewer symptoms when young and do not develop aortic enlargement and other signs until they are adults, it said.

Some conditions, like those affecting the heart, blood vessels, bones and joints, can worsen over time, it said.

This makes it very important for people with Marfan syndrome and related disorders to be diagnosed accurately and early and treated, it said.

Source : Vietnam News , 5th Oct 2017 

Mum in race to get surgery for 'humpback' daughter whose spine is bent at 50 degrees

Yasmin Dennett, 12, has idiopathic scoliosis and her spine in curved at a 50-degree angle

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Yasmin Dennett loves to dance.

The 12-year-old is a fan of sports and enjoys running round with her friends at school like most other children.

But after her mum Zoe noticed that Yasmin started to develop a strange curve in her spine, she discovered her daughter has a condition that is creating a 'humpback' effect and could risk crushing her lungs and heart.

Yasmin has idiopathic scoliosis, which has caused her spine to curve at a 50-degree angle.

She has to wear a body brace to keep her spine from moving too much and Zoe is desperate to get her daughter pioneering spinal treatment .





Yasmin's hump-shaped back makes her anxious about her appearance





She has to wear a body brace to keep her spine in place 



A scan shows just how curved Yasmin's spine is

The only surgery available in the UK is spinal fusion, but this stops the growth so is not recommended for Yasmin at the moment, her mum said.

But Zoe fears if Yasmin doesn't have alternative surgery soon the curve of her spine could end up impacting on her heart and lungs.

The 39-year-old noticed a strange curve in her daughter's spine about 12 months ago and knew something wasn't right.

Single mum Zoe told the Mirror: "Last year I noticed that her back looked strange and her ribs didn't seem right.

"I took her the hospital where they did a scan and they said she has scoliosis. I was in shock, I had never heard of this condition.

"Yasmin was fitted with a spinal core brace which she has to wear most of the time.

"She is just 12 years old and it breaks my heart to hear that she just wants her spine to be normal. I don't want to see her suffer anymore."

As if dealing with her daughter's condition wasn't enough, Zoe fought with kidney cancer a year before Yasmin's spinal problems arose. She said Yasmin is often in pain and gets anxious about how her back looks.




The brace exaggerates Yasmin's hump, which makes her feel self conscious




Yasmin pictured with her mum Zoe




She could have spinal fusion surgery but it would mean she would lose flexibility

And for the schoolgirl who loves to dance and play sports, it is a difficult thing to deal with.

Zoe added: "Yasmin has a very visible 'rib hump' that measures 18 on a scolimeter - this is very high. She is in a lot of pain and is now very conscious about how she looks and is very anxious about what will happen to her as she continues to grow.

"Since finding out she has scoliosis, Yasmin has not been the happy go lucky girl she has been. I am also very worried about her mental state of mind. "

Spinal fusion, available on the NHS, is not favourable when a child is still growing as it stops the growth, Zoe said.

She added: "If we wait until she stops growing to have surgery, the curve will be very big and will impact her lungs and heart."

Instead, Zoe wants to send her daughter to Germany to have surgery which will enable Yasmin to play sports, dance and do the things she loves. This surgery is called Vertebral Body Tethering, and will see a small cord inserted into Zoe's back, through keyhole surgery, to “tether” the vertebrae where the curve is.

Surgeons will reduce the curve significantly during the surgery and the tethers will continue to reduce the curve while she grows. And, most importantly, this surgery would prevent the scoliosis from progressing, Zoe explains.

But it doesn't come cheap - Zoe is trying to raise to £40,000 to fix her little girl.

"If she has the NHS spinal fusion surgery, she would have to live with this for the rest of her life," said Zoe. "She wouldn't be able to do a lot of physical activities.



Zoe wants her daughter to have the best treatment available



Yasmin loves to dance and play sports

"But this other treatment looks amazing and would mean she could have a normal life. It needs to be done while the bones are still growing otherwise it will be too late.

Zoe has launched a crowdfunding page online to try and raise the cash to send Zoe to Germany.

She said: "I am asking for help to raise the money to enable her to have the VBT surgery before her remaining growth time runs out. I am a single working parent with a small family and am really struggling to raise all the money after having surgery myself last year for cancer."

The mum is also calling for schools to start checking for scoliosis at an early age so it can be detected.

She said: "Our schools do not check for scoliosis in kids and all that is needed is a simple bend over test that only take a few seconds.

"I feel very bad that my daughter's scoliosis was wasn't picked up earlier when it wasn't so severe, so maybe bracing at an earlier age could have helped and avoided surgery."

To help Yasmin, you can donate here.

Source : Mirror,UK - 6 Oct 2017

Titanium rods in her spine can't keep this Toronto teen from the stage : Toronto

Just 3 months ago, Jaya Scott underwent surgery for scoliosis. Now she's one of CNE's 'Rising Stars'

Warming up backstage before recital is a routine that Jaya Scott has performed dozens of times, but for the 17-year-old from Scarborough, Sunday night was special.

The young dancer took to the stage for the first time since undergoing spinal fusion surgery for scoliosis at SickKids Hospital — something she feared could mean the end of her dance career.

It was about two years ago when Scott's mother first sensed something was wrong.

• After painful surgery and recovery, Oakville teen not just a model, but role model too
• 'Results were amazing' when teens with scoliosis did specialized exercises
• Teens' scoliosis helped with braces

"I was just noticing a little bit of her back sticking out when she bent, and her shoulder was slightly off-balance," Natalie Scott said.

An 'intense' year

Scott took her daughter to the hospital, where they were referred to a specialist. It wasn't long before she was fitted with a brace and told she'd have to wear it 23 hours a day.

For the next year and a half, Scott said she watched as her daughter struggled, on a waiting list for surgery with no fixed date in sight.

"Wearing it at school each day, taking it off to dance, putting it back on and trying to cover it underneath her clothes," she said. "It was quite an intense year and a half."

In May, it was finally time to go under the knife. Over the course of nine hours, doctors would place two titanium rods on either side of Jaya's spine to correct a 60-degree C-shaped curve.

Over the course of nine hours, two titanium rods would be placed on either side of Jaya's spine to correct a 60-degree C-shaped curve. (Submitted)

All the while, Scott said Jaya was fixated on one thing only: "Mom, am I going to be able to dance again?"

Discovering new ways to move

Doctors assured Jaya she would. But before she could dance, she'd first have to relearn how to walk.

"It was a little bit of a struggle at the hospital at first," Scott recalled. But with each passing day, Jaya was exercising a little more, walking a little more, and getting that much closer to the stage again.

Before she was diagnosed with scoliosis, Jaya's dance specialty was contortion. But the metal rods in her back meant that was now physically impossible. 

Warming up backstage before recital is a routine that Jaya Scott has performed dozens of times, but for the 17-year-old from Scarborough, Sunday night was special. (Barry Smith/CBC)

"It was hard because I had to discover new ways to move my body and new things to do other than contortion because that's what my body's used to," Jaya said. "It was challenging at first."

Jaya was just grateful she'd be able to dance at all, especially after having to sit on the sidelines as her teammates competed this year.

Then, two weeks ago, came the news Jaya had been waiting for: Her doctor gave her the clearance to dance again — just in time for the Rising Star talent competition at the Canadian National Exhibition.

'You've got to walk before you can dance'

Jaya was elated.

"I just hope to be the best that I can be," the teen told CBC Toronto ahead of her performance.

If the crowd's reaction was any indication, Jaya did exactly that, wowing the audience with a jazz routine choreographed to the classic I Put A Spell On You.

Jaya's mother, Natalie Scott, said she motivated her daughter through recovery by telling her, "You've got to walk before you can dance." On Sunday night, she did just that. (Submitted)

"When I'm dancing it's like I'm telling a story," she said. "It's very meditative, I just feel relaxed when I dance and I feel like I can just express myself.

For her mother, who watched as her daughter's confidence shrank under the weight of a brace for more than a year, seeing Jaya dance in that effortless-looking way was worth all those nights of anxiety spent showing her success stories of people who'd managed to take up their passions again after surgery.

"One of the things I would keep saying to her is, 'You've got to walk before you can dance.'"

An on Sunday, Jaya did.

Source : CBC News , 28th Aug 2017 

Family of teen with neuro-muscular disorder seek PMO's help for drug worth Rs 48 lakh available only in United States

A 14-year-old girl Anushka Panda suffers from a rare neuro-muscular disorder called spinal muscular atrophy (SMA). The disorder affects the nervous system that controls muscle movements. A drug that could help cure the condition costs Rs 48 lakh per year and is only available in the United States.

Anushka's parents have now approached the Prime Minsiter's Office and met the health minister for help. Anushka was just a year-and-a-half when she was diagnosed with the disease, which is progressive and life threatening.

"I have Scoliosis so I wear a brace which is very uncomfortable. Life at home is little easier than the one I lead at school," said Anushka.

Fo all these year, there was no cure for this disorder but now Anushka's parents have a ray of hope after a US-based company developed a drug called Spinraza. But the drug is available only in the US and is priced at $ 75,000 per year, which amounts to Rs 48 lakh.

"She was diagnosed with Scoliosis of the spine which means the muscles do not have the strength to hold the spine erect. It has become a threat to her life and we are not able to take the call on her surgery. It is an 18-hour surgery and the child needs to have at least 50 per cent of lung funtion. I sincerely request the PM to intervene or may be the External Affairs minister can talk to US and make the drug available to our kids. I also request that the health care system in India is revamped so that the cost will not be a matter later," said Anushka's mother.

Dr Anshu Rohatgi, senior neurologist, Sri Ganga Ram Hospital, joins Rajdeep Sardesai to explain the disorder and whether the drug can be made accessible to Anshu and other patients suffering from the disorder. "It is a very rare condition where the neurons in the spinal cord degenerate and you have a progressive muscular weakness. The drug Spinraza has shown some promise. It was approved in the US in 2016. Unfortunately, this drug is very expensive. It costs approximately Rs 48 lakh in the first year, thereafter it costs Rs 24 laks in the next year," said Dr Rohatgi.

"Bringing down the cost might not be possible unless the company agrees to. India is very far away from researching in these critical areas because, unfortunately the clinical trials have disappeared since the last few years. None of the big companies come to India for trials because of the environment," he added.

For Video , Please visit on : http://indiatoday.intoday.in/video/neuro-muscular-disorder-spinal-muscular-atrophy-scoliosis-spinraza-us-india/1/1039222.html

She's one of Britain's most talented swimmers but without a £45k operation she will never swim again

A talented 12-year-old swimmer from Shirley faces the "devastating" prospect of never competing again without life-changing surgery on her severe spinal deformity.

                                              Marion with her parents Carolyn and Brenton

Schoolgirl Marion Cole was diagnosed with idiopathic scoliosis in May this year and has a 68 degrees curvature of the spine, causing her unbearable pain.

The Croydon High School pupil requires surgery and hopes to go to Germany to have vertebrate body tethering (VBT), which aims to correct the spine's curves without the need for a fusion.



                                                          Swimming is 'Marion's life'

A fusion procedure on offer in the United Kingdom would mean she would never be able to swim again.

However, the German procedure will cost £45,000.

Carolyn Camphell-Cole, Marion's mother, has seen her daughter suffer since January this year and told the Advertiser the family will do all it takes in order to raise the cash required.

The 48-year-old, who lives on Pleasant Grove, in Shirley, with her daughter, said: "Day to day it causes her pain and just before we went off on school holidays it was a struggle for her to walk from the bus stop to home which is only two minutes away.

"It knocked her confidence and to be honest with you I can't put it into words how it has taken her to where she was to where she is now.

"When you come home and you see a 12-year-old who should be running around but is lying in bed with a hot water bottle to try and ease the pain, it's never nice to be honest."

Marion is a member of Dulwich Dolphins Swimming Club and was a Surrey county champion in 2015 and an Independent Schools Association national champion in 2015 and 2016 in her age group.

The youngster, who still swims 14 hours a week despite the pain, is also part of the school cross-country and netball teams but has had to reduce her sporting activity due to her condition.

Ms Camphell-Cole, who works as a specialist nurse, explained that if Marion was to have the surgery in this country, it will involve spinal fusion, which would leave her back immobilised.

She said: "I can't even begin to tell you the impact it has had, especially on her. She was the Surrey county champion two years ago and went to the London swimming regionals in May this year and came away with three bronze medals.

"She has still managed to maintain her swimming but if the proposed [UK] surgery goes ahead it will leave her back absolutely immobilised so she won't be able to swim again."

Marion has been attending intense physiotherapy sessions over the past few weeks at Scoliosis SOS Clinic, in London, in an attempt to try and ease the pain.

So far £3,000 has been raised and Marion's mother is continuing to hold events to try and reach their mammoth target.

She admits it would be "devastating" if her daughter had to give up swimming.

"I wouldn't even begin to try to think about what it would do to her," said Ms Camphell-Cole.

"I do not want to begin to go there. If she goes swimming and has pain she battles through it and comes home crying and that is just devastating for her and myself.

"Swimming is her world and it's her life."

To donate to the JustGiving page and help pay for the £45,000 operation go to www.justgiving.com/crowdfunding/carolyn-campbell-cole

Source : Croydon Advertiser , 6th Sep 2017 

FITED: FIGHTING SCOLIOSIS WITH 3D TECHNOLOGY

“Just as a cast, braces and orthoses need to fit like a second skin”, says Akanksha Vyas, founder of Fited. Together with Erdem Ay, she’s running the tech start-up Fited, which – with photos and 3D printing – is revolutionizing a process that has basically been unchanged for the past hundred years. I talked to Akanksha about Fited’s e-health solution, designed to beat scoliosis.”

Akanksha, how would you describe Fited in one tweet?

“Fited makes 3D-prints braces and orthoses on the basis of normal and x-ray photographs.”

What exactly does Fited?

“Braces and orthoses protect and support the human body during recovery. As of now, Fited mostly makes braces for people suffering from the back-condition scoliosis. But later on, we want to expand the assortment by orthoses. Think, for instance, of knee braces, a band for a tennis elbow or an ankle-foot orthosis.”

How does Fited work?

“We take four pictures of the client in sports clothing and a few x-ray photographs. This is how we detect what the actual problem is, just as with the traditional approach. But those exact four photos are also sufficient for Fited to make a 3D design and print the actual brace or orthosis which fits well and offers support at the right spot.”

How is that done with a customized brace or orthosis?

“The operating physician or orthopedist takes x-ray photographs to make a diagnosis. Afterwards, they make a molding tool in the lab which is then handcrafted into the final product by a specialist. In principle, this is still the same process as around 100 years ago and highly time-intensive. This is what we want to change with Fited.”

What does the name ‘Fited’ mean?

“The name Fited comes from ‘fitted’. We can make customized and perfectly fitting braces and orthoses for everyone.”

What’s your vision?

“The market for braces and orthoses is highly segmented. Or put differently: The equipment and means are not everywhere available where they are needed. We want that people all over the world can benefit from Fited. This does not only improve living conditions but also helps to increase acceptance of these kinds of medical aids. You need very few resources and equipment to use Fited. That’s why it can easily be used in developing countries too.”

What made you start with Fited?

“Erdem’s mum suffers from scoliosis. She has had back pain for all her life but they diagnosed her with scoliosis only quite late. Only years later, she got a brace, but ran into the same issues as many others: The brace didn’t fit well, so she didn’t wear it. The consequences were pain as a daily companion and a lot of other complications too.”

What did you do about it?

“Erdem an  I used to work for a company that manufactures 3D-printed personalized inner soles. That’s where we learnt that the process has been the same for a long time, while there is a lot of promising technical possibilities out there. We saw an opportunity in combining innovative technology with our own experience to improve the condition of Erdem’s mum and many other patients like her.”

What’s the target group for Fited?

“Everyone who needs a brace. We work together with hospitals and physicians, mostly orthopedics. Scoliosis often starts in the age of ten or eleven, and is more common among girls. If kids wore a brace until they are 16 or 17, a surgery at a later moment in life can be prevented. 2% of the world’s population suffers from scoliosis, but only 30% are actually diagnosed with it.”

In which countries are you active?

“For now, we are focusing on the US, Turkey and the Netherlands. We chose these three countries because we both lived in the States when we started with Fited. Erdem originally comes from Turkey and has a lot of connections there. And the Netherlands are known for their open innovation culture which is a perfect starting point to enter the European market.”

Who are your competitors?

“One large competitor are the traditional scoliosis labs, who are making plastic braces and orthoses in the traditional way. Next to that, there is a company in the US (Unyq) and another on the UK (Andiamo), but they are not using photos to make the braces. Fited is also the only one exploiting the whole process.”

What is your revenue model?

“The selling price is at around 2000 to 3000 US-dollars. Physicians are the ones deciding whether they advise this to their patients. Fortunately, our product is covered by insurance.”

What’s on the Fited agenda?

“Currently, we are running pilots in several hospitals in Istanbul and the Netherlands. In the Netherlands, for instance, we work together with Lodewijk van Rhijn, head of the orthopedics department at the Maastricht University Medical Center. After consultation, he is testing our braces with several of his patients. The pilot runs until beginning 2018 and then we hope to launch our product.”

What are you doing to raise awareness for scoliosis?

“We are involved in a Scoliosis Awareness Program. It’s a cooperation with The Bayer Foundation. We developed an application that can detect all possible symptoms of scoliosis. With this, we hope to draw attention to scoliosis, to reach people all over the world and create a community. The earlier we can diagnose scoliosis in screenings, the more and better we can treat and cure it.”

What is your greatest challenge?

“In the beginning, we mostly focused on our product and how it works. But when we started with our pilots in the US and the Netherlands, we noticed that for 70% of the affected, scoliosis is diagnosed way too late. This has become our most important challenge to focus on right now, we do this together with The Bayer Foundation.”

Why did you sign up Fited for the Accenture Innovation Awards?

“We would like getting in touch with people who can contribute or even join our mission in increasing awareness for and acceptance of scoliosis. And of course, we also just want to reach more people in general. After all, our ultimate goal for the long-term is that everyone in this world is screened for scoliosis and has access to appropriate treatment.”



Source : Accenture Innovation Awards , 12th Sep 2017 

Emmett teen diagnosed with scoliosis hopes for innovative surgery

Mercy Roberts has always loved hiking, swimming, and being active, but these days she hasn't been able to be the 13-year-old she wants to be. At just 10 years old Mercy began complaining of back pain. That's when her sister noticed something strange.

"She called me in and said 'mom, take a look at her back.' and I leaned over and was rubbing her back and I said 'oh my goodness she has scoliosis'," explained Mercy's mother, Kitti Roberts. 

Back then her condition wasn't as aggressive. 

"My first thought was a couple of trips to the chiropractor will fix that right up. Little did we know that it wasn't quite that simple," said Kitti.

After doing a lot of research and wanting to stay ahead of the condition, Mercy's family took her to specialists right away who devised plans for treatment.

They thought they could at least stall the progression, but it didn't work, so they moved on to non-traditional methods.

"Yoga and all kinds of different weird exercises I found online," explained Kitti.

But still, nothing worked.

"Just to watch her condition worsen and worsen is very heartbreaking for myself, all of my siblings, and my parents," said Mercy's sister Autumn White.

"It's crushing. We as dads always want to take care of our kids and to be in a position where I can't fix something is very very difficult," said Mercy's dad, Robbie Roberts.

In only three years the condition has progressed to a state so severe, the pain is unbearable.

"Mercy actually has a double curve. She has almost an 'S' going on and her curves are both over 100 degrees which is very very significant," said Robbie.

Then, hope. A doctor in New York has agreed to perform an innovative surgery on Mercy, but the catch, because it's so new it isn't covered by insurance.

The family will have to pay the six-figure bill all out of pocket. 

"I've seen my siblings slash their budgets just to be able to put as much money towards this as possible. We are all putting stuff up on craigslist. We are thinking of any way that we  
can raise money," said White.

They've already raised more than 18,000 dollars, but for Mercy to get the surgery they still have a long way to go. 

"I just feel so humbled and awed and inspired at how people can give us so much to help," said Mercy.

"Myself and my entire family, we are a very pull yourself up by your bootstraps and get the job done and work as hard as you can. This is one of the few instances where I lack the capability to make this happen on my own," explained White.

Another family from Indiana whose daughter recently had the same surgery donated a Harley Davidson motorcycle to them. In order to raise funds, they are hoping to raffle the bike off by distributing 1000 tickets for a 100 dollar donation a piece, however, there is no purchase necessary in compliance with Idaho gaming laws.

"I just keep on thinking about the people who have it worse than me and realizing how brave they have been and how brave that all of my siblings have been in trying to help me. It just inspires me," said Mercy.

But Mercy isn't only hoping to have the surgery to change her life, she hopes that the surgery will also change people's lives around the world. 

"If I have this surgery then maybe it will become more common practice to use this surgery to make people better and it might change the world a little bit," said Mercy.

To See her video / help , pls visit on this website: http://www.kivitv.com/news/emmett-teen-diagnosed-with-scoliosis-hopes-for-innovative-surgery?page=2