(beraking latest news) – The name speaks for itself: “We are not waiting”. A community of parents of children with type 1 diabetes chose it as a ‘hashtag’ for a movement born and raised online all over the world, with the aim of giving “an answer to the need for automated insulin administration systems from an early age.” This community “felt that companies were going too slowly to meet the needs of children, adolescents with type 1 diabetes and their families,” and “decided to join efforts globally. Some were computer programmers, others engineers. Expertise was pooled and it was decided to start working on an algorithm to be produced open source in a network open to all of us who wanted to contribute. Gradually, with everyone’s corrections and modifications, these algorithms came to life and were made available to the entire community”. Thus were born the first ‘do-it-yourself’ artificial pancreases, in jargon Diyaps (Do-It-Yourself Artificial Pancreas System).
To tell the genesis to beraking latest news Salute is a mother who made this choice 6 years ago for her son, Elena Frattolin who today, representing Diabete Italia – Idf Europe, spoke precisely about this theme at an event held in Berlin. A meeting between all the players in the sector. “I’m an engineer – retraces Elena – and, I must say, at the beginning I preferred to study for 3 years to understand how it worked. I wanted to be sure I could put my son in the hands of that system, I wanted guarantees, I wanted to see what was going on.” Her son was diagnosed with type 1 diabetes at age 13. The do-it-yourself artificial pancreas “began using it around the age of 18. Today she has been managing her disease like this for 6 years. This system is one of the things that has allowed him to live a peaceful life, to do what he wanted. We live in Udine, he went to university in Padua, now he’s in Holland” again for study reasons.
Children with type 1 diabetes, Frattolin explains, are “people who live with a chronic disease that requires a very high number of decisions to be made 24 hours a day, 365 days a year, for correct management. This leads to very high psychological stress. In order to have a decent glycemic compensation, a whole series of problems must be addressed. Children and their parents find it difficult to manage the disease in school, for example. Even sport becomes a business: it happened that some of these kids after the diagnosis were advised to leave and devote themselves to something else. But a 7-8-10 year old child has every right to dream of becoming the future Maradona” or the future Paola Egonu.
Many parents, then, Frattolin testifies again, “make the decision to leave their jobs in order to always be available” for the management of their children’s pathology. “And I could go on for hours. But these examples – he points out – give an idea of how deeply the need for an automated system was felt by the parent community. Above all, all of us parents want the best glycemic compensation, we want to protect the health of our children from the complications that may arise in the long run. But it’s not just that. There is also the need to manage the other siblings, who often suffer greatly from the attention concentrated entirely – come on – on the brother with the disease. It is also difficult for a parent to be able to leave their young child with a babysitter. He has to deal with continuous interventions, when the child sleeps, while he plays or has a snack with his companions ”.
Interventions that, the mother continues, “break the normality of life, also create the feeling of being different, and not autonomous and independent like the others. So yeah, I switched to this system because it’s a system that we needed so badly and when we started they weren’t available. Today the pharmaceutical companies are finally making a move, we have some systems approved in Europe as well, we don’t have all the ones we need. The commitment of the online community on Diyaps seems to have acted as a driving force and now we hope that regulatory bodies, companies, specialists and all authors, sitting together around a table, as is happening in Berlin, can discuss and understand where we can go, understand the urgency of some choices”.
“Ours – reflects Frattolin – was a choice which, seen from the outside, could be ‘criticismable’, because you rely on an unapproved system. But he must consider that there is still a need not yet fully satisfied for a therapy that must be tailored to the patient. And patients are not all the same, personalization is needed. A sportier child or young person has a lower need for insulin than a sedentary child and, as another example, I have seen babies of a few months with sensors that are too big for them, disproportionate. Therapy must be tailored”.
Now what’s missing? “We have been hoping for a position statement for some time – says Frattolin – Surely diabetes specialists on the one hand cannot prevent the use of these do-it-yourself systems, and on the other they must not even push in that direction. But it is important that scientific societies take note that these tools exist and also give indications, so that it is not the ‘Far West’, so that paediatricians feel a little more reassured”.
Then, he concludes, in Berlin “we emphasized the importance that the approvals of these automatic tools take place with the same rapidity even for the youngest children, for whom times are much longer today and these little ones risk remaining back with the technology”. So the parents’ message is: “Do it quickly, do it well, do a lot, because there are diversified needs that await an answer”.