Giulia, the story of a record-breaking Paralympic champion

It was her smile that first made us want to hear her story.

Giulia Terzi, 26, recently came back from the Tokyo Aquatics Centre with five Olympic medals from five races (two golds, two silvers and a bronze) — a new Italian and European record. Within the space of just weeks, she was also awarded, with top marks, a degree in law, to add to a previous one in political science. All in all, she is a real wonder woman, blessed with truly enviable determination and perseverance.
“When I asked her how all this makes her feel,” says Isico physiotherapist Martina Poggio, who had the privilege of interviewing her, she said: “It’s like a dream that I am still struggling to take in. It is the culmination of countless sacrifices. Each time I pick up my medals and look at them, I am reminded that hard work, sacrifices and everything you have to give up really are worth it, and can take you to the top, even though it can be hard to believe it at the time.”

Giulia also explained: “I went through some very difficult years. I was diagnosed with congenital scoliosis at the age of just 3 years, and therefore embarked on an exercise-based treatment at a very young age. When I was 14 years old, I spent 9 months wearing a plaster cast and that was followed by 4 years of bracing. Between 2015 and 2018, I had three operations, and as a result of medullary complications that arose subsequently, I am now in a wheelchair. I have found that the secret is to have the right people around you, trust those who love you and, whenever you need it, ask for help.  No one is invincible and some days and periods are more difficult than others, but with the love and support of family, friends and the right people, you can overcome anything! My parents and siblings have been crucial in helping me get through the hard times, I owe them so much!”

Giulia has a great Instagram profile, full of content, where she writes: “In my case, scoliosis has meant casts, braces, three operations, and titanium rods in my back with all that that entails. But, more than all of this, the word scoliosis, to me, means lots of other things as well. It means a bond, that special bond created through the looks you exchange with those around you, who see how hard you have to fight every single day, fight back tears when you are being taken off for surgery, but also look at you with so much pride whenever, despite everything, you achieve an objective. Scoliosis means pain, sleepless nights spent trying to sleep on a table or the bedroom floor. It means resilience, because all of this has, after all, allowed me to develop into a much stronger person, teaching me to endure fatigue and to pour ever more determination into making my dreams come true, because nothing has been allowed to get in the way of those! It also means love, for the people who have been by my side since the start, and ice creams that could not be enjoyed outdoors, in a park, but had to be eaten in a hospital bed, laughing about it, like it was the normal thing to do. When you find yourself facing a difficult situation, it’s so easy to let yourself get dragged down by negative comments, words and fears, but in the end, it is the energy and determination with which you pick yourself up that shows you for the person you are and that, whatever your problems, that must always win through.”

I prefer to quote Giulia’s exact words because I really believe that only someone who has gone through this experience themselves can really understand what it is like for our youngsters having to wear a brace day after day, rising bravely to the challenges that scoliosis brings” Martina Poggio says. 

“I wanted to turn a spotlight on Giulia, because she is a great example and her story illustrates perfectly the importance of fighting every day and not giving up on your dreams.”

The scientific literature reports perioperative complication rates of between 5% and 20%, depending on the surgical approach and the type (severity) of the complications themselves (Weiss, HR., Bess, S., Wong, M.S. et al. Adolescent idiopathic scoliosis – to operate or not? A debate article. Patient Saf Surg 2, 25 (2008). https://doi.org/10.1186/1754-9493-2-25). The rate of neurological complications after posterior fusion is 0.32%.

Unfortunately, Giulia is part of that very small percentage, but her case is a crucial reminder of the fact that every difficulty can also bring new opportunities. This is a message aimed both at those youngsters who, through exercises, are trying to make sure their condition does not worsen to the point of needing bracing treatment, and also at those who are wearing a brace in the hope of managing to avoid surgery.

“Another important aspect of this story, worth underlining, is the important role played by sport,” Poggio points out. “As Giulia says, “sport is fundamental, because it helps you experience lots of different worlds and get to know loads of people. But it also presents you with many challenges and helps you overcome barriers. My particular scoliosis-related barrier was the idea that “I can’t…”.
Instead, what sport teaches you is that you can! And you also learn that this is partly thanks to the support you get from being part of a group that believes in the objective you have set yourself and helps you to achieve it.”

“It can certainly be difficult fitting in sports training, studying and physiotherapy” says Giulia, reflecting on a typical day in her life. “However, I think that health has to be the number one priority and that, to stay fit and well, you need to show the same level of commitment to your treatment as you do to your other pursuits. Studying is another key area that shouldn’t be neglected. Education is crucial when it comes to building your future and chosen career, and studying is clearly the key contributor to this objective. The trick is to be organized: I do two hours of swimming in the morning, followed by a gym or physiotherapy session. Then I go home to study. I do another couple of hours in the pool in the afternoon, and then in the evening it’s back to my books!  It’s a tough schedule, but this year I managed to win a gold medal at the Paralympic Games and graduate in law, earning top marks with honours, so all in all I would say that all my sacrifices have paid off!”

Many of our youngsters who do competitive sport are familiar with the challenges Giulia describes. When they are told that they need to wear a brace full time, their main concern is making sure they can go on practising the sporting activity they have dedicated so much to. The physicians at Isico agree that it is hugely important to ensure that wearing a brace does not interfere too much with these young people’s lives. Indeed, everything possible is done to make sure that they can go on training every day, in spite of the treatment they are receiving.

We asked Giulia what advice she has for youngsters dealing with scoliosis and its challenges on a daily basis, and she replied: “Don’t let barriers and prejudice stop you. Unfortunately, you are bound to meet some, but we all have hidden resources. If you can discover those, you can develop into a great man or woman. Learn from your sport, and on difficult days try and find at least one reason to be happy! Everything is easier with a smile on your face!”

We end with another valuable consideration taken from Giulia’s Instagram profile. She says: “I think that you really need to embrace pain fully. Don’t try and block it out: let it in and learn to live with it. It needs to take its time and work in its own way. It has to develop before it weakens. After that, the scars will fade, but only with time. It doesn’t make sense to try and hide them. People can’t always be invincible. Instead, I firmly believe that those who sometimes allow themselves to be fragile are actually stronger.”

Back and neck pain and smartphone: is there a correlation?

Can being bent over the smartphone too often cause back- and neck pain in younger people? Data coming out of the study Posture and time spent using a smartphone are not correlated with neck pain and disability in young adults: A cross-sectional study, published some time ago by the Journal of Bodywork and Movement Therapies are not confirming this.

The cross-sectional correlational study was conducted in a sample of students selected through convenience sampling between September 2016 and March 2017: the inclusion criteria were university students at the School of Medicine and Surgery, routine/daily use of mobile devices with advanced computing and connectivity capability built on an operating system, and aged 18–30 years. A total of 238 volunteers were recruited.

“The objective of the study – explains Prof. Stefano Negrini, scientific director of Isicoand one of the authors of the research– was to determine the impact of smartphone use on neck impairment and functional limitation in university students. Neck pain was assessed using a visual analogue pain score (VAS) and a pain drawing (PD); disability status was measured using the Neck Disability Index (NDI-I); cervical postures while using the phone were captured using the Deluxe Cervical Range of Motion (CROM) device”.

While half of the young medical students reported neck pain, the use of smartphones was not correlated with neck pain and disability. “While we wait for future prospective studies -ends Prof. Negrini – there is no reason to recommend a change in smartphone use habits among young adults in the meantime”.

Isico among the attendees of the November SRS webinar

A new webinar for professionals is scheduled for November 7, part of the cycle of those organized in recent months by the SRS (available on the pages of the society’s website).

Two specialists from Isico, our scientific director, Prof. Stefano Negrini and Dr. Fabio Zaina, Isico physiatrist will be taking part in this online event titled Current Status of Bracing in Adults and Adolescents:An SRS-SOSORT Collaboration.

Join the SRS Non-Operative Committee and the Society on Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT) for a webinar analyzing the current evidence and practice guidelines for bracing for adolescent and adult patients with spinal deformity.

This webinar will provide a systematic analysis of the current evidence and best practice guidelines for bracing management of patients with spinal deformity in both adolescents and adults. With variations in brace design and documentation of long-term benefits, use the consensus discussed to clarify your current practice and brace selections.
There will be an update on the current training of Orthotists, including specialization, fabrication, fitting and deformity correction.

To register please visit the page of the SRS website

Digital Transformation at ISPO: Isico is there

The theme of the international online conference of the International Society for Prosthetics and Orthotics (ISPO), scheduled from 1 to 4 November will be “Digital Transformation in an Evolving World”: the World Congress will explore how digital transformation affects all aspects of using and working with assistive technology, from booking a clinic appointment and electronic health records to computer-aided design, microprocessor-controlled prostheses or orthoses, or video conferencing and social media.

 During the event, Prof.Stefano Negrini, Scientific Director of Isico, will present three posters, Modular Effective as Custom-Made. A Matched Case-Control Study of Modular Italian MI-brace vs Very-Rigid Sforzesco Brace in AIS”, “Introducing Pelvis Semi-Rigid Material does not change Short-Term Very-Rigid Sforzesco Brace Results. A Matched Case-Control Study in AIS” and “Reducing the Pelvis Constriction Changes the Sagittal Plane. A Retrospective Case-Control Study of Free Pelvis vs Classical Very-Rigid Sforzesco Braces”. 

Furthermore, Prof. Negrini will also hold a workshop on November 2nd on Innovations in the Design of Hard Rigid Braces for Adolescent Idiopathic Scoliosis Treatment in collaboration with Guerrino Rosellini and Fabrizio Tessadri of the orthotist’s shops ITOP and Orthotecnica.

SEAS lands in France!

SEAS – Scientific Exercise Approach to Scolisis has taken an important symbolic step. The first training course for physiotherapists was organized in France last week. The implication, almost exciting, is that the location of the course was Lyon.
This place represents the historical cradle of scoliosis treatment. The city where the corrective plasters, the Lionese brace and the homonymous method of exercises were conceived which inspired all Italian physiotherapists when the concept of conservative treatment of spinal misalignments landed in Italy.
Even the SEAS can count among its ancestors the method of exercises conceived by the surgeon Pierre Stagnara at the “Centre des Massue”, the hospital that was the destination of all those who in the period between the 60s and 80s were on pilgrimage to learn how to systematically approach the treatment of scoliosis.
The SEAS was originally inspired by the simplistic concept of Lyon’s self-correction and then developed with the modern vision of rehabilitation treatment, creating the basis for the development of an approach based on the principles of conceptually advanced motor learning.
“This is the aspect that the students of this first French course appreciated -explains Michele Romano, Physiotherapy Director of Isico – About half of the class of 20 participants was made up of teachers from physiotherapy schools who came together for the discovery of SEAS. The concepts exposed and the linearity of the reasoning enthusiastically impressed the students who were still tied to the old Lyonnais method, never evolved over the last 50 years”.
At the end of the course, the next appointments have already been scheduled. In November in Paris, to end the year with a bang, and three new courses next year in Toulouse, Corsica and the French overseas Caribbean territories.

Can bracing improve trunk asymmetries in young adults?

Scoliosis is a condition characterised by the presence of a vertebral deformity in the three planes of space. The extent to which this deformity is visible externally varies from case to case. As stated in the guidelines recently developed by SOSORT, one of the primary objectives of scoliosis rehabilitation treatment is to improve trunk asymmetries. Achieving this objective has important implications for quality of life — after all, having a positive self-image helps to ensure a good level of psychological wellbeing and this, in turn, translates into a better quality of life.

Not uncommonly, adolescents with scoliosis lack the willpower or motivation to undertake bracing treatment, or perhaps have never had a medical specialist recommend it to them; others, quite simply, may not even have realised that they had scoliosis.
Basically, many different factors can affect what scoliosis treatment a person received, or did not receive, in adolescence. But the fact is that some people reach adulthood before realising, for example, that they have one waist straighter than the other, that part of their rib cage protrudes, or that one breast is higher than the other.

What can be done to improve these asymmetries?

“Although there is no scientific evidence available to help us answer this question with precision, we at ISICO have performed some bracing treatments in young adults (up to 25 years of age)explains dr Fabio Zaina, physiatrist – In such cases, our doctors, during the consultation, are clear from the outset: this is a long and demanding course of treatment. For the first few months, the brace should be worn full time, i.e., for 23 hours a day, after which the brace-wearing time is reduced very gradually in an effort to maintain the results obtained”.

Patients wanting to start bracing must be absolutely convinced about it and highly motivated, too, because any sudden interruption of the treatment, without respecting the abovementioned weaning-off phase, can negatively affect the stability of the spine.

On the subject of stability, we should also point out that bracing treatment must always be combined with specific exercises based on self-correction. The purpose of these exercises is to keep the back muscles strong and teach the patient how to keep their trunk correctly positioned during the various activities of daily life.

Can adults obtain a radiographic improvement?

Unfortunately, radiographic improvements cannot be achieved in adulthood. In individuals who have reached full skeletal maturity, bracing is never proposed with this aim in mind.

In other words, bracing in adults can improve the external asymmetries related to the scoliotic curves, but it cannot reduce the Cobb degrees of the curves themselves.

Are there no other options available for adults who are reluctant to wear a brace?  

“Adults can always follow a specific physiotherapy programme based on self-correction exercises explains Valentina Premoli, physiotherapist- These exercises are a way to act on the postural component of scoliosis. They serve to counteract the spine’s tendency to collapse to one side, and can thus improve the functioning of the back generally. This type of treatment helps to limit the worsening of the asymmetries that accompanies the spine’s tendency to give way in the direction of the curves — a tendency that becomes increasingly marked as we get older”.

Scoliosis and pregnancy

For a woman, discovering she is pregnant is often one of the most memorable, most exciting and happiest moments in her life. Thinking about the baby, imagining it and talking about it, not to mention feeling it inside her, arouses a number of precious and positive emotions: hope, tenderness and love. However, at the same time, pregnancy leads to various changes, in her body, her self-image and her vision of the future.
Furthermore, she will need to make adjustments and seek new balances in her (often busy) daily life, her rhythms and her relations with others. 

All this can generate normal and entirely understandable fears, and these can be amplified in mothers-to-be who happen to be affected by a condition like scoliosis. Many such women will already have expressed anxiety over their ability to conceive, carry and give birth to a child.
Pregnancy and childbirth, on account of the physical demands they make, can indeed be quite a daunting prospect for these women.

An interesting recent review of the literature (Dewan MC, Mummareddy N, Bonfield C. The influence of pregnancy on women with adolescent idiopathic scoliosis. Eur Spine J. 2018 Feb;27(2):253-263. doi: 10.1007/s00586-017-5203-7. Epub 2017 Jun 29. PMID: 28664223.), focusing on the interaction between pregnancy and scoliosis, examines these very issues. Just to give an idea, in numerical terms, of the analysis carried out, this review included 134 articles and examined 22 studies, referring to a total of 3125 patients.

First of all, the review considered whether and how scoliosis affects the timing and outcomes of pregnancy. It would appear that women with idiopathic scoliosis need not worry about their possibility of having children, even though they have a slightly lower probability of becoming pregnant compared with age-matched women, and may be slightly more likely to receive fertility treatment. Furthermore, women with scoliosis, regardless of whether they underwent surgery or bracing treatment, can expect to have a similar number of children as healthy women. 

However, the studies considered have certain limitations: most of them failed to specify whether the women with scoliosis had been actively seeking or desired a pregnancy. Similarly, it is not clear whether all the patients were followed up until menopause. Furthermore, marriage rates, often not even mentioned, were not uniform across the studies.
In the absence of indications on these aspects, the higher nulliparity rates among women with scoliosis could be misinterpreted.

Isico at the SRS 56th Annual Meeting

The SRS 56th Annual Meeting, running from 22 to 25 September, 2021, was a hybrid event that included a robust in-person programme live in Missouri, USA and a virtual component, to allow delegates who were unable to attend in person to follow and enjoy the event. Isico took part with a podium presentation of its research “The natural history of adults with spinal deformities: results from a prospective collection of radiographic data”, given by dr. Sabrina Donzelli (Isico physiatrist) and a poster presentation, by Prof. Stefano Negrini (scientific director of Isico), entitled “Reducing Pelvis Constriction Changes the Sagittal Plane. A Retrospective Case-Control Study of 37 Free Pelvis vs 451 Classical Consecutive Very-Rigid Sforzesco Braces”. 

The Scoliosis Research Society (SRS) Annual Meeting is a forum for the realization of the Society’s mission and goals, the improvement of patient care for those with spinal deformities. Nine faculty-led instructional course lectures, case discussions, and 180 abstract papers were presented on an array of topics.

The Isico research started from current data telling us that scoliosis also affects adults and that patients with scoliosis treated during growth should have their backs regularly monitored in adulthood. This applies particularly to those with curves that measured more than 30 Cobb degrees when they finished growing. Curves measuring more than 50 degrees, on the other hand, are at high risk of worsening, and in these cases, therefore, surgical treatment is indicated. 

This is what we know, but do we know whether there are any particular times or ages at which the risk increases? Are there any conditions that might be associated with the risk of worsening?   

No one has ever investigated the factors that determine progression of the disease” explains Dr Donzelli, “because long-term monitoring of patients is a costly process. On the other hand, knowing when it is really necessary to increase the frequency of checks would allow timely interventions and therefore help to reduce costs. In our retrospective longitudinal study, we analysed the factors involved in the progression of scoliosis.”

The Isico researchers began by collecting data from radiographs the patients had undergone over the years. They measured these radiographs and, for each patient, plotted curves showing scoliosis worsening over time. In all, 767 patients (mean age 35 years, 85% women) met the inclusion criteria and were able to provide at least two X-rays taken in adulthood and at least 5 years apart. 

The authors then analysed which of the following factors influenced changes in Cobb degrees over time:    

  • Gender (F or M)
  • Idiopathic diagnosis (yes/no)
  • Menopause (yes/no)
  • Thoracic localisation (yes/no)
  • Comorbidities: bone metabolic diseases, bone and joint inflammatory disease, neurological associated disease (yes/no)
  • Brace during growth (yes/no)
  • Back pain (yes/no)
  • Family history of spine deformities (yes/no)
  • BMI at baseline (continuous)

The results of the research showed age to be one of the main predictors of worsening: after the age of 50, the risk of worsening increases, therefore from this age it is a good idea to start having more frequent check-ups; moreover, the forms of scoliosis seen in adults are different, and the period of time over which scoliosis appears and then progresses is much longer. 

“There are numerous factors involved, and research in this field is still in its infancy,” concludes Dr Donzelli. “The lengthy monitoring times and the very small variations occurring over time make it particularly complicated. Systematic data collection and regular monitoring over time are essential not only for research purposes, but above all to ensure timely preventive intervention.” 

Congress in Bulgaria: Michele Romano awarded

In Sofia/Bulgaria, September 11-12, 2021 the VIII National Congress of the Association of Physiotherapists in Bulgaria: “Interdisciplinary approach and current trends in practice” took place. 
Both the current trends in practice on a national and global scale, as well as the future development of the profession in Bulgaria were discussed during the Forum. The scientific program once again provided an opportunity for the exchange of information and innovations in the field of physiotherapy and rehabilitation – national experience and world achievements.
The congress had a special section for the treatment of scoliosis and Michele Romano, head of physiotherapy in Isico, gave two presentations.
One was titled “Scientific Exercises Approach to Scoliosis (SEAS)” and the second one focused on “Scoliosis Manager”: the Isico web tool for patients’ management available free for everyone. In its protected version adapted to Isico’s internal clinical and rehabilitation needs, it is the daily working tool for Isico’s expert professionals. 
Further to giving these two presentations, Michele Romano was awarded a commemorative plaque by the Bulgarian Association of Physiotherapy, who wanted to express with this recognition their gratitude for his ongoing commitment and dedication in the field of physiotherapy.

My brace has helped me to grow up!

I’m Ilaria, and I have spent the past 6 years wearing a scoliosis brace.

At last, on 28/6/2021, after countless sacrifices, many, many moments when it felt like everything was against me, and others when things seemed to be going better, I finally came to the end of my “journey” with ISICO.

In spite of the difficulties I had along the way, as time went by my check-ups became increasingly encouraging, my back stabilised, and I was able to leave my brace off more and more; also, thanks to the exercises, the cosmetic appearance of my trunk improved.

There have obviously been lots of ups and downs over these years, but these have helped me to grow up: I now know that the low points teach you the importance of persevering, of keeping your head held high and always looking for the positive side of things.

Through wearing a brace, I have come to realise that I was a rather superficial person before. However, over time I have matured, and in fact, I learned to really appreciate the true value of situations and times spent both in and out of my brace.

My brace also helped me to appreciate what people really thought of me, and how much they cared about me.

When I first started wearing a brace, in the 4th year of primary school, my classmates and teachers didn’t know at all what it was for or understand why I needed to wear it. For them, there was no point to it, whereas I realised that it represented my “salvation”.
Luckily, over time and in my next school I came across people (classmates and teachers) who knew more about it and were always very supportive.

One very important factor in getting me to the point I’ve reached today was the “brace camp” holiday, organised by ISICO, that I had on the island of Asinara in Italy in 2018. There, I made some lasting friendships and learned that wearing a brace on holiday was no big deal, even if I could only leave it off for a few hours a day.

During that holiday, the physiotherapists taught us that doing postural exercises for our backs could actually be fun. They encouraged us and helped us to “put up” with keeping our braces on for the prescribed number of hours. What’s more, even though we weren’t able to spend very much time with our braces off, we were still able to enjoy the sea and the natural surroundings. They even taught us how to go in the water in a brace.

In the course of this whole experience, I have met many different people, with different stories, and this has helped me to see that while everyone at ISICO is on the same journey, each person experiences and approaches it in their own way.

I want to thank Dr Monia Lusini, who has always been a great support, whatever the circumstances, but my most heartfelt thanks go to my parents, who have always been there for me through thick and thin, supporting me and encouraging me not to give up and always to be proud of myself and persevere.

My parents are amazing, always ready to do anything for me and give me whatever I need.

Finally, I hope the things I have said might be of help to lots of other young brace wearers out there!

My message to them is: stay strong and stay brave because in the end all your sacrifices and hard work will pay off. Before you know it, you will be seeing the light at the end of the tunnel!

And don’t forget! Go in the sea as often as you like… just slip on your brace undershirt, brace and swimming costume and go for it! After all, there’s nothing quite like a refreshing dip ❤️