Chemmatters, October 2017
When tooth decay hits, your dentist fi lls the cavity. But have you ever thought about what is in the fi lling? It used to be gold, now it’s a polymer.
https://www.acs.org/content/acs/en/education/resources/highschool/chemmatters/past-issues/2017-2018/october2017.html
#American Chemical Society
Genetic investigations are the latest tool for busting unsafe microorganisms and improving air quality in buildings
By Sergio Pistoi
Youris.com, April 10, 2017
Usually associated with humid and sordid slums, mould is a frequent finding in wealthy homes too. Even the fanciest buildings may harbour hot spots where fungi and other microorganisms subtly proliferate, triggering problems that range from unpleasant smells to severe sickness.
Miia Pitkäranta, a Finnish molecular microbiologist, pioneered the use of DNA investigations to identify and study indoor microorganisms during her Ph.D. at the University of Helsinki. She later became a practitioner in the building industry, specialising in indoor air quality.
Pitkäranta is a member of the International Society of Indoor Air Quality and Climate (ISIAQ) and has contributed to updating the national guidelines on air quality in Finland. youris.com asked her about the fascinating world of microbes in buildings, their impact on our health and how DNA technologies are becoming a tool to improve the air quality of buildings.
Which communities of microorganisms live in our homes and offices? Which of them need more attention?
Of course, it’s okay to find microorganisms in any building. Some come from outdoors, and many are yeasts or bacteria that are symbiotic with the users themselves or their pets. Nobody expects to live in a sterile environment. Problems arise when some microorganisms grow excessively. One of the first signs we look for when we investigate a building is the presence of mould and moisture because they are usually associated with microbial hot spots.
In a dry environment, microbes tend to lay dormant in the dust or on the surfaces. Dust is dirt, but it will go away when you ventilate or clean. Mould and moisture hot spots are entirely different ecosystems. Whereas dust is basically a collection of microorganisms that are already found in our bodies and in the outdoor dust, hot spots contain a few types of filamentous fungi, yeasts and bacteria that proliferate in moisture.
What problems are associated with indoor hotspots?
We have over 100 years of research showing that moisture and mould in buildings correlate with sickness. Many studies have associated them with asthma. I would say that asthma is the most studied symptom because it’s easier to identify. Other warning signs, such as eye irritation or dripping nose are even more widespread, but they are harder to quantify and record. There may be several mechanisms involved: direct toxicity, irritation, allergies.
However, it’s difficult to establish a clear cause and effect relationship, because the symptoms are also common to many other pathologies. Some research has linked moisture and mould to a series of non-specific symptoms: headaches, fatigue, dizziness, neurological or autoimmune disorders. We definitively need more research on the topic.
The term sick building syndrome (or SBS) was once used to include many health conditions linked to living indoors, but SBS is not considered an existing entity anymore. Today we believe there is not one syndrome associated with buildings as such, but rather a wide variety of agents and individual sensitivities that create an array of possible symptoms.
How can DNA be used to identify indoor microbes and what are the advantages?
The standard way to analyse a microbial hot spot is to take samples from it, cultivate the organisms in the laboratory and identify them with a microscope. One problem with cultivation is that you select only those species that can grow in the laboratory, and you lose the majority of the original biodiversity. By looking at the DNA instead, we identify directly which genomes, and therefore which species, are present.
DNA methods are faster than cultivation – they take days instead of weeks – and are non-selective. Another advantage of DNA methods is that they discriminate between single species, whereas with cultivation we usually identify microbes at the genus level, and each genus may include dozens of species. Today we know, for example, there are a lot of interesting species in indoor moulds that were underestimated with cultivation studies. As for any ecosystem, it’s important to know as much as possible about the diversity of species to understand how the community functions.
[…. ] Read the full interview here: http://www.youris.com/Health/Interviews/Is-Your-Home-Healthy-Ask-The-DNA
by Sergio Pistoi, Youris, 17 October 2016
If aliens were to examine a human, they would think we were just slavish organisms designed to feed microbes and carry them around. Our bodies contain ten times more bacteria than cells, and there are an estimated 3.3 million genes in the total bacteria DNA, which is 160 times the number of human genes. Our intestine hosts about one kilogram of bacteria which help to digest and metabolise food, produce vitamins and protect us from infections.
The above is textbook knowledge, but loads of recent studies are uncovering new and unsuspected roles for these little companions. There is evidence that gut bacteria can protect or predispose us to pathologies ranging from inflammation to diabetes and obesity. And, as far-fetching as it sounds, a remarkable amount data shows that they can even modify our mood and behaviour.
Microbes are hot on the scientific agenda. In May, the US government launched a National Microbiome Initiative with an overall budget of half a billion dollars, while the EU is funding more than 300 projects related to the microbiome.
Yolanda Sanz, a researcher at the Institute of Agrochemistry and Food Technology (IATA) of the Spanish National Research Council in Valencia, Spain, coordinates MyNewGut, the largest EU consortium in the field with 30 partners in 15 Countries. We asked Sanz about the perspectives of research and the intriguing connections between the microbiome and the brain.
What makes our gut flora, and how does it change over time?
Our intestine hosts a complex ecosystem of bacteria; we call it the gut microbiota, which includes at least 1000 difference species. We get most of our gut microbes soon after birth, although there is evidence of colonisation even during prenatal life.
Over the first 2-3 years of life, the microbiota is very unstable in its composition. This condition overlaps with a period in which the immune system is still immature. At this stage, the microbiota is greatly influenced by diet, for example whether you are breastfed or not.
When an adult diet takes over, the composition of the gut microbiota becomes more stable and a microbiotic profile emerges. This usually prevails until old age when the diet goes back to being less diverse and more unstable, such as in babies. In some way, the evolution of microbiota reflects our growth and senescence.
Do we therefore have a sort of microbial identity, a bacterial fingerprint that is unique to an individual?
—-> Continue reading
Personal preferences rule at the fish counter. However, experts have used objective methods to judge the taste and nutritional qualities of farmed fish, and their results may put a few noses out of joint among those people who spend more to go for the wild-caught version.
“Fish coming from aquaculture can have more fat, but that’s because they move less and eat more regularly than what they would do in the wild. Apart from that, the nutritional profiles can be indistinguishable,” says Sadasivam Kaushik, founder-director of Fish Nutrition Laboratory at the National Institute of Agronomical Research (INRA) in Bordeaux, France.
When it comes to taste, wild fish usually have more diverse and distinct flavours, depending on the compounds they absorb from the environment, such as bromophenols, which give a distinct “sea” aroma. Many people swear to be able to distinguish wild fish once they are on the plate, but it’s not always the case.
Emilio Tibaldi, a professor of aquaculture at the University of Udine who co-authored a report for the Italian Ministry of Agriculture, says that a panel of tasters he put together for the study could not distinguish between wild and farmed sea bass [article continues here]
Read more: http://www.youris.com/Bioeconomy/Food/Which-Is-More-Wholesome-Wild-Or-Farmed-Fish.kl
Sergio Pistoi, Youris.com
Link to the original article: http://www.youris.com/Energy/Ecocities/Cyber-Attacks–Are-Smart-Cities-Safer-Or-More-Vulnerable.kl#ixzz4AEuSWq4n
In the wake of the Brussels bombings, the French blogger Francis Pisani addressed the quandaries of modern, connected European cities facing terrorist threats. There is no simple answer to attacks, he noted, but most measures have an impact on our mobility.
More controls mean that we need to wait for our luggage to be X-rayed, or to line up for double checks at a gate. And many train stations are slowly turning to airport-like security measures. Mobility, a feature of modern, connected economies, is the first victim of security.
A freelance journalist with credits in various French newspapers and an enduring interest in information technology (IT), Pisani embarked on a world tour in 2012 and 2014 to look for examples of urban innovation. He then gave a clued-up account of this in an ebook published by the UNESCO (available in English and French).
Most of his recent work is devoted to studying and reporting examples of participatory technologies that can improve city life.
Let’s start with the basics. You have often criticized the term “smart cities”. Why?
The sociologist and politician Jean-Louis Missika once said the term smart city is a pleonasm because humanity has not done anything more intelligent than cities. I agree with him: all cities are smart. So I think the question becomes: what is the process to make a city smarter?
In this process, I see a tension between what I call the datapolis, a city based on data, and participolis, which thrives on participation and where citizens use IT while also contributing with their minds.
During my tour I was amazed to see how many applications people create independently of any municipality. And that’s where you find most smartness. After all, the internet has evolved in a similar way: with the web 2.0, we moved from an architecture of data to one of participation.
Can cities use technologies to improve security without sacrificing our freedom to travel?
I think they can, but always at the expense of our privacy. For example, airports or stations can create a fast lane for those who accept background checks, biometric controls or smart cards connected to databases which expose their privacy to the authorities. Or they can facilitate security with pervasive cameras and sensors that also have an impact on privacy.
Someone who promises more security, mobility and privacy at the same just isn’t credible. It’s just an illusion: there is always a trade-off in one of these variables.
Negotiating between these needs should be a central topic in the political debate. I would like to see politicians who are technology-savvy and to put the question high on their agenda, but it’s not happening.
City officials often have a poor understanding of technology. Many just want their cities to be “smart”, and give the keys to IT companies that say: we are going to make it happen! That’s not the best way to proceed.
Cities should have an autonomous and participative strategy and then look around for the best technological solution. In Lyon, for example, the city decided what they wanted, they control the data, and the IT company only provides the technology they need.
Are smart cities safer, or are they more vulnerable, because their infrastructure can be a target for cyber criminals?
Photo credit: Laetitia Attali, courtesy of F. Pisani
Sergio Pistoi, Youris.com 20 April 2016
Link to the original article: http://www.youris.com/Energy/Interviews/The-Social-Life-Of-Bricks.kl
Growing up, Miodownik turned his fixation into a successful career. He became a materials scientist at the University College London, the director of the UCL’s Institute of Making and a widely known speaker and BBC presenter. His research interests include biomaterials, innovative manufacturing, and sensoaesthetics, a science that investigates the intricate relationship between people and the materials they use.
We asked Miodownik to share his views about the rediscovery of traditional materials in modern architecture, and how tomorrow’s buildings will cross the border between new and old technologies.
Do you think there is still value in using wood, straw, wool, or other traditional materials for buildings?
I don’t see being “traditional” as a value per se. The choice of materials has to be assessed with modern criteria, which include sustainability and energy consumption. If you ask me whether traditional materials are appropriate for modern buildings, I think the answer is yes. Partly because traditional materials have a portfolio of properties that are sometimes better than anything we have created recently: wool, for example, is a fantastic insulator.
Partly because it’s the whole ecosystem that matters. In the old days, the building materials we used were part of the landscape, and they were easier to recycle. New materials are not usually like that. When it comes to sustainability, traditional materials are often more efficient.
Construction experts point to limits in the public perception. Some described the three little pigs syndrome, a misconception by which buildings made with traditional materials, such as wood, would not be not as stable or durable as concrete. Is this vision widespread? And does our cultural background influence how we perceive materials?
There is no simple answer. Anthropological studies show that different cultures favour different materials, but the ways people relate to materials is extremely complex. The texture, the feel, the colour or even the imperceptible smell of an object can affect our emotional state. The materials we choose for our house, or the clothes we wear, not only represent us are but they also change how we are. Therefore, the materials we choose for a building can have subtle social consequences.
However, I don’t think that the “three little pigs syndrome” you describe is so widespread. People generally trust the engineers and rarely think about buildings collapsing, unless they live in an earthquake zone.
Rather, I believe that the influence of the global culture is predominant. People worldwide associate concrete, glass, and steel with modernity – think of the iconic image of a skyscraper – and this cuts across many cultures, especially in countries that are switching from rural to urban.
In the industrialised countries, I see much more of the opposite syndrome: many people don’t like concrete and are looking for alternative materials to build their homes.
My sports shoes have a new waterproof layer and a classic leather upper. Will buildings go the same way, layering technologies and crossing the border between old and new materials?
THE INTERVIEW continues here. Please read on!
By Sergio Pistoi
Youris.com, 14 March 2016
In the late 1980s, the German-born chemist Michael Grätzel literally tied his name to an invention that is hailed as a revolution in renewable energy.
Dye-sensitized solar cells (DSSC) – officially dubbed Grätzel cells to honour their creator – are transparent photovoltaic cells inspired by the way plants generate energy.
Artificial photosynthesis is a term often used to describe this technology. A professor at the Ecole Polytechnique fédérale de Lausanne (EPFL), Grätzel has an impressive catalogue of honours that include a Millennium Prize, the top global award in technology. Thomson Reuters listed him among the most influential scientific minds of 2015.
What is the difference between a conventional solar cell and a Grätzel cell?
Traditional photovoltaic cells are made of silicon crystals. It’s a solid-state system based on a semiconductor, very much like the transistors we see on a computer or radio. When light hits the silicon, it produces electrons and also works as a conductor for them. The movement of electrons creates an electric current.
Instead, DSSCs mimic the natural process of photosynthesis by using dyes to capture light and produce a current in a semiliquid gel, just like a leaf does.
A green leaf is like a miniature solar field. We know from school that the first step of photosynthesis is a photoelectric event in which pigments, such as chlorophyll, react with light and produce the electrons. These are transported to other molecules that ultimately reduce CO2 and water to sugar and oxygen.
DSSCs follow the same idea: they contain a dye that reacts with light and produces electrons that flow to other molecules in the gel. Instead of doing photosynthesis, they end up at an electrode, generating an electric current that we can use. The whole system takes place inside a transparent glass or plastic.
What are the pros and cons with DSSC?
In standard conditions, they are still less efficient than silicon cells. However, in cloudy conditions and diffuse light DSSCs are three times more effective, which makes them ideal for indoor use, even with artificial lighting.
DSSCs are also transparent and can be made in different colours, so you can replace windows with stained glass that produce electricity. They are creating a market for many new applications.
Where have they been used?
The first product to be commercialised was a backpack powered by DSSC cells. Our Convention Center in Lausanne has a façade made with DSSC panels produced by the Swiss company Solaronix. An Australian company, Dyesol, is working with the Turkish government to scale up the production of renewable energy with DSSC.
Another Swiss company, G2E, set up a huge DSSC installation for the Austrian pavilion at the 2015 World’s Fair in Milan. My wife and I went there this summer. It was our birthday, we were born the same day, and she’s also a scientist in my group. We saw “our” solar panels capturing the Italian sun and transforming it into electricity to charge a car. It was a very moving moment for us both.
Who owns the patents on this technology?
There are hundreds of patents on DSSC technology today. The EPFL, where I work, owns about 60. In 1988, we registered the first patent on DSSC and in 1993 the EFPL signed the first licence agreement.
The patents are licenced to companies on a non-exclusive basis. This decision was difficult at the beginning. Licencing was widespread in the US but there were few or no examples in Europe, where people just sold their patents.
The French government has recently announced a project to cover 1,000 kilometers of roads with solar panels . What do you think about it?
It strikes me as a crazy idea. The panels will need protecting if cars and lorries are to pass over them. I suspect that the maintenance costs alone will be prohibitive. Isn’t it just simpler to make many solar fields?
I think policy-makers should be more mindful about the feasibility of their projects, otherwise they could jeopardise the entire sector.
Five years ago, the Spanish government suddenly stopped subsidising solar energy which had been an ambitious programme that was meant to last longer. But the money ran out. Because of this failure, many companies went broke. It brought about a crisis that threatened the whole solar industry.
Ricki Lewis, a science writer and the author of a widely adopted college Genetics textbook, asked to me write a guest post on her popular blog DNA Science, a part of the PLOS website. I was honoured to contribute with a few tips on how to give science conferences for teenagers and high-schoolers, largely based on my successful experience with the Geni a Bordo tour. What follows is an extract, read the full article on the PLOS website.
Bringing Genomics to High School Students: A Survival Guide
(This week DNA Science has a guest post from Sergio Pistoi, a science writer and molecular biologist from Italy.)
When I gave my first conference about genomics in a high school, I thought of what Jerry Seinfeld famously said about the fear of speaking in public: “Most people would be better off inside a casket than doing the eulogy at a funeral.”
I don’t have any fear of speaking in public- I am a professional science writer and a reasonably experienced presenter. However, the mission of getting a few hundred teenagers to drop their jaws at the marvels of DNA and –omics stuff made my self-confidence wobble for a moment. High school students are incredibly bright and curious — but an auditorium packed with them? Mmm, it can quickly turn into a distracting, noisy environment, in particular with an unprepared speaker. At least, that’s what I believed.
Today, after talking about genomics with over 10,000 teenage students, I still think it’s not easy. But I learned how to make such events work most of the time. And I know they can be awfully rewarding, with the right approach and a good deal of planning.
by Sergio Pistoi. Originally published on Youris.com: http://www.youris.com/Bioeconomy/Food/Digging-Into-The-DNA-For-A-Successful-Diet.kl#ixzz41BsUMWy3
Genetically-tailored diets are in vogue. But do they work?
Fees are typically around 100 euros, and all you need to do is spit into a tube, mail it back and log on a website a few days later. Some websites include remote assistance by certified nutritionists.
Genetic nutrition companies insist upon the benefits of their approach. The scientific foundation for DNA-tailored diets comes from nutritional genomics, or nutrigenomics, a major field of research that looks at the interactions between genes, food, metabolism and health.
Recent studies have found at least 140 locations in the human genome involved in controlling fat and body weight. However, there is scant scientific evidence to support the use of DNA in dietary practice, because very few studies have looked specifically into the matter.
“To get reliable answers, you need to do clinical trials with hundreds of people over a few years, with costs that are in the millions of euros, which is out of reach for most of the start-ups in this business,” says John Mathers, a Professor of Human Nutrition at Newcastle University.
Mathers was a principal investigator in the world’s largest trial in nutrigenomics, the research project Food4Me, which involved 500 volunteers in Europe. Some received standard dietary recommendations; others followed a more personalised programme, and a third group was given personalised advice that took into account the results of DNA tests.
Six months later, all those receiving personalised advice were eating significantly healthier than those on a standard diet. However, there was no difference between those in the group who looked at their DNA and those who didn’t.
Mathers argues that the personalised approach, regardless of DNA information, was the key to success. “If you ask me whether it’s worth including the DNA tests in nutritional practice, my answer is: we are not there yet,” he says.
His conclusions are similar to those of the Academy of Nutrition and Dietetics, the world’s largest organisation of nutrition professionals. A position paper from the Academy affirmed that “the use of nutrigenetic testing to provide dietary advice is not ready for routine dietetics practice”. The Food4Me results have been submitted for publication to a peer-reviewed journal, says Mathers.
However, two other studies frequently cited by nutrigenomic companies recognized the advantage of genetically-tailored diets.
In a trial at the University of Toronto published in 2014, people who received DNA-tailored advice lowered their sodium consumption significantly more than those on a standard sodium-sparing diet.
In the same year, a group at the Burlo Garofolo Hospital in Italy recruited 191 obese people and found that those using a DNA-matched diet lost 33 percent more weight than those who were assigned to a standard calorie-counting group.
Researchers presented their findings at a scientific meeting and are now verifying the results on larger groups, says Paolo Gasparini, who co-authored the study. Given the results of Food4Me however, it’s difficult to tell whether the benefit in these two trials came from personalising the diet or actually from including DNA-based advice.
“There is a need for larger studies, yet I think there is an added value for using genetic information in diets,” says Gasparini, who is a geneticist at the Burlo Garofalo Hospital and the University of Trieste and a consultant for a nutrigenomic startup.
He draws attention to something often neglected in nutrition: our palate. Gasparini and his team travelled for two years in Europe and along the Silk Road in Asia gathering information about the food preferences of 4,000 people together with samples of their DNA.
The study revealed a series of genetic variations involved in the liking/disliking of a dozen foods, including artichokes, bacon, broccoli, coffee, dark chocolate and white wine.
According to Gasparini, a better understanding of these genes would help us to design more successful personalised diets because they would be more of a hit with our taste buds. “A major hurdle in diets is that if they are not palatable, people don’t follow them in the long run,” he says.
More and more studies are linking individual variations in the DNA to differences in how we process and metabolise food; yet we still lack basic understanding about the genetics of obesity and how a diet interacts with our genome.
Mathers and Gasparini agree that this lack of knowledge is the biggest bottleneck in the practical applications of nutrigenomics. Future studies, extended to the whole genome instead of single genes, will be essential, says Mathers.
Gasparini stresses that DNA tests may be useful only if they are part of a comprehensive, personalised nutritional program: “A diet based only on DNA is the equivalent of a horoscope,” he cautions.
Read more: http://www.youris.com/Bioeconomy/Food/Digging-Into-The-DNA-For-A-Successful-Diet.kl#ixzz41Brxupo3
La Mamma Compulsiva è una veterana del raccordo anulare, guida senza mai perdere il filo del discorso. Dal sedile del passeggero osservo la periferia est di Roma scorrere intorno a noi e mi giro a guardare Nina: dorme imperturbabile allacciata al suo seggiolino. La incontro per la prima volta ma è come se la conoscessi da sempre: sono fra le migliaia di fan che la seguono sulla sua pagina Facebook e uno degli oltre mezzo milione di visitatori del suo blog. Nina ha una malattia genetica che ancora non ha neanche un nome. La sua ascesa a piccola star del web la dice lunga su come la medicina narrativa e i social network aiutino a superare la solitudine delle malattie rare. E apre una finestra sull’ultimo boom della sanità in rete: la medicina narrativa e i social networks di pazienti. I numeri raccontano di un mondo di pazienti sempre più interconnessi, e di piattaforme specializzate sempre più grandi. E da quando nel lontano 2008 il New England Journal of Medicine descriveva l’alba di queste applicazioni come “una scossa tellurica”, il terremoto non accenna a fermarsi.
La Mamma Compulsiva si chiama Isabella, è lei che cura il sito di Nina. Nel blog ognuno ha un soprannome: Nina è la Microba, mentre la vivace sorellina è la Piccola Hooligan. “Appena nata ha rischiato di morire” racconta Isabella guardando la piccola dallo specchietto retrovisore, “era livida come un peruviano preso a pugni da Rocky Balboa”. La sua auto-ironia stupisce solo chi non frequenta il blog, che si distingue per lo stile brillante, a tratti divertente, con cui racconta le lotte quotidiane contro la malattia e le difficoltà pratiche, ma anche l’affetto e la gioia per Nina, e le giornate di una famiglia che cerca di essere felice. “C’è chi scambia l’humor per cinismo” avverte Isabella “ma in fondo è solo un modo per non piangersi addosso”.
I numeri raccontano di un mondo di pazienti sempre più interconnessi, e di piattaforme specializzate sempre più grandi.
Sul blog c’è ancora una vecchia foto della Microba neonata, del luglio 2011. Un parto troppo lungo, un cordone ombelicale troppo corto, il sospetto di una malattia genetica senza una diagnosi precisa. La lista dei sintomi di Nina comincia a riempire un’intera pagina. Per i genitori catapultati nel vortice di una malattia rara e sconosciuta la disperazione è dietro l’angolo. Le informazioni dei medici arrivano col contagocce, iniziano i viaggi da un istituto all’altro, prende piede l’idea di essere una mosca bianca. Isabella è impiegata in una catena di cinema, il marito (nickname: Papà Velcro), lavora per una compagnia ferroviaria. Entrambi sono appassionati di immersioni, Isabella ha anche partecipato ad un famoso record di permanenza subacquea, 14 giorni al largo di Ponza, nel 2007. Fermati. Respira. Pensa. E’ la formula che tutti i sub si ripetono davanti ad un pericolo inaspettato, e forse è proprio il sangue freddo a salvare la coppia dal panico. Vanno su internet, approfondiscono ogni parola che sentono nei colloqui con i medici. Tornano da loro con informazioni e domande precise. Cominciano a frequentare i forum in rete e s’informano sui centri migliori.
La pagina Facebook ha oltre cinquemila fan. Non sono i numeri di una webstar, ma niente male per una bambina di due anni con una patologia che neppure ha un nome.
Nei siti di e-health i pazienti tengono traccia dei farmaci che usano e ne annotano regolarmente gli effetti, condividendoli con gli altri. Non è ancora chiaro se questi dati siano davvero utili per il singolo, ma sono sicuramente preziosi per la ricerca e l’industria farmaceutica. Non a caso, fra i partner di patientslikeme ci sono tutte le maggiori aziende del farmaco. La piattaforma più nota è PatientsLikeMe.com, un network nato in Massachusetts per mettere insieme pazienti affetti da SLA e che conta ad oggi oltre 250 mila utenti in tutto il mondo che condividono informazioni su oltre 2000 malattie. Curetogether.com, un altro grande network di pazienti, è stato da poco comprato dalla compagnia di genomica 23andme che vuole affiancare alle funzioni social i dati sul Dna dei pazienti. Nascono infine networks specializzati nelle malattie rare, come rareconnect.org. L’e-health, una definizione che grossomodo include tutto ciò che sta cavallo fra internet e salute, è oggi una disciplina in piena evoluzione con tanto di congressi internazionali e riviste scientifiche specializzate. Il blog di Nina nasce come un modo per tenere informati amici e parenti. “Non ne potevamo più di aggiornare tutti al telefono!”, confessa Isabella. Ma pochi giorni dopo il contatore segna già migliaia di visite. Altre persone colpite da malattie rare hanno cercato su Google uno dei tanti sintomi di Nina e sono finite lì nel sito. E poi c’è il passaparola, gente sconosciuta che si appassiona alla sua storia. Isabella decide di aprire anche una pagina Facebook, che oggi ha oltre cinquemila fan. Non sono i numeri di una webstar, ma niente male per una bambina di due anni con una patologia che neppure ha un nome. Soprattutto, attorno al blog si forma una comunità virtuale che aiuta a superare l’isolamento. Persone in giro per l’Italia che condividono i progressi di Nina e i momenti di sconforto. Famiglie con problemi simili che si scambiano esperienze pratiche ma non rinunciano all’autoironia, in linea con lo stile del sito. Come succede nella “banda del tubo” la sezione del blog dedicata all’alimentazione enterale: si tratta di un tubino collegato direttamente allo stomaco, che quando serve si attacca ad una siringa con la pappa, o a un dispensatore portatile (nina ne ha bisogno per via di un fastidioso reflusso che ancora le impedisce di mangiare normalmente). Detto così sembra facile, ma dalle spiegazioni di Isabella intuisco che non lo è affatto, e infatti su Youtube i tutorial postati da vari genitori sono gettonatissimi, così come le discussioni sui forum. Un altro piccolo aiuto che si trova in rete. Oltre al supporto morale dal blog arrivano anche donazioni spontanee, piccole raccolte organizzate da “zie” e amici virtuali che si tramutano in ore supplementari di fisioterapia, protesi, attrezzature speciali. E’ un sostegno inaspettato ma importante. “Ci sono molte cose che la Sanità non rimborsa. Per fortuna col blog Nina si paga quasi tutto da sola,” scherza Isabella.
Nina si sveglia quando usciamo dal raccordo e ci fermiamo davanti ad una palazzina. Al pianterreno c’è lo studio di Sabina, una terapista esperta in riabilitazione neurocognitiva. Nina ci sente grazie ad un impianto acustico, ma ha imparato ad aiutarsi leggendo le labbra. Come tutti i bambini della sua età traffica con l’Iphone della mamma e ha già capito come azionare i suoi giochi preferiti, tra cui un piano elettronico con cui se la cava benissimo. Corre verso il cancello un po’ barcollante (“dobbiamo provare un nuovo tipo di scarpine ortopediche, con queste sembra uscita da un pub inglese”, commenta Isabella), però è abbastanza veloce da costringerci a inseguirla. Le sedute di terapia (una spesa extra che le donazioni aiutano a coprire) contribuiscono agli indubbi progressi della Microba. Anche Sabina ha un blog piuttosto seguito- è da lì che arrivano molti dei suoi pazienti — e tiene su Skype lezioni a distanza ai genitori. “Il web ormai fa parte dei miei strumenti professionali” mi dice.
Il rovescio della medaglia è che i social sono anche un crogiolo di bufale mediche. A tal proposito Sabina, che si trova spesso a rispondere ai dubbi dei pazienti con malattie rare, mi snocciola l’elenco cronologico delle mode dubbie e spesso costose contro le quali ha dovuto lottare negli ultimi anni: dal metodo Vassiliev (un trattamento farmacologico propagandato da un biologo isrealiano) alle palline vibranti, passando da un’intera serie di tutine miracolose e cicli intensivi all’estero. Come dire che il metodo Stamina, di cui ora si parla così tanto, è solo l’ultimo di una lunga serie di rimedi sospetti. “E’ la moda di quest’anno, fra un po’ ne arriverà un’altra,” spiega disincantata. Isabella annuisce. “Noi siamo dotati di un sano scetticismo, ma per molti non è cosi”, sospira. Ha ragione. L’oceano del web è ricco di risorse, ma non tutti sono preparati. E alla fine i pazienti devono saper navigare a vista, cercando di scansare le patacche. E gli squali.
Esistono almeno 6–8000 malattie rare, definite come patologie che colpiscono meno di 1 su 2000 abitanti. I tre quarti colpiscono in età pediatrica, e 8 su 10 sono di origine genetica. Per le malattie più rare si conoscono poche decine di casi nel mondo. Sono spesso malattie orfane, perché a causa della loro rarità sono trascurate dalla ricerca farmaceutica e dai grandi investimenti pubblici, a cui si aggiunge la difficoltà di diagnosi. Anche se prese singolarmente sono rare, il loro numero fa sì che nel complesso interessino almeno 30 milioni di europei.
Salutiamo Sabina e ne approfittiamo per fare una passeggiata nel parco degli Acquedotti. Isabella spinge caparbiamente il passeggino vuoto sullo sterrato che costeggia gli archi Romani, mentre la Microba trotterella davanti a noi e urla con entusiasmo ‘ane! (cane), ‘ecora! (pecora), ‘leleo! (aereo) indicandoli con il ditino. La sua chioma ricciola e crespa e il carattere spigliato catalizzano l’attenzione affettuosa dei passanti, esattamente come in rete.
La mamma è convinta che il blog di Nina contribuisca a cambiare l’atteggiamento verso la disabilità. “Le immagini e le storie di Nina non sono sterile esibizione. La trasformano in un volto familiare senza nascondere la sua situazione. Faremo il possibile perché la nostra bimba sia sana, ma non vogliamo inseguire la parvenza di una “normalità” a tutti i costi. Tentare di omologare, o peggio di nascondere crea il disagio, la curiosità morbosa. E chi conosce Nina si abitua a considerarla normale anche se è oggettivamente diversa”, afferma. Dopo aver visto la cosa da vicino non posso che condividere un tale manifesto comunicativo.
Prima di salutarci, Isabella tira fuori il cellulare e ci scatta questa foto per la pagina Facebook. Dopo pochi minuti il post ha già raccolto decine di commenti simpatici. Poi mi indica un punto appena fuori dal parco: è la scuola materna di Nina. Le chiedo come immagina il futuro, quando Nina sarà più grande e magari meno pacioccosa di ora. “Ogni tanto mi domando cosa penserà. Sarà d’accordo con tutta questa pubblicità? Non lo so. Ma per noi questa è la cosa giusta da fare adesso”. E’ l’unico istante in cui la Mamma Compulsiva si incupisce e abbandona la sua contagiosa autoironia. La recupera subito mentre abbraccia il Microbo. “Una cosa è certa, da grande sarà un bel caratterino. E avrà anche il pass per parcheggiare gratis. Vuoi mettere? A Roma solo per quello sei già un buon partito.”
Questo articolo è originariamente apparso (in forma leggermente diversa e con altre foto) sul numero di dicembre 2014 della rivista Wired Italia.
Photo Credits: In viaggio con Nina
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