Covid-19 and Implications for CdLS

What can we do for our people with CdLS in the current Covid-19 (Corona) crisis

We have sought advice from our professionals on any extra considerations for our CdLS people. We appreciate there are different situations in different countries. The general advice from SAC President Feliciano Ramos is:

  "In the case of CdLS, isolation measurements apply the same as for “high risk” members of the population (elderly, people with previous conditions, etc.). Parents (families) of patients with CdLS should take all recommended precautions. If they go to work or to places where they are in contact with other people, those general recommendations should be strictly applied with regard to themselves in order not to bring the virus home. Nevertheless, for any acute situation, specially if it involves the respiratory system (with fever) medical care should be immediately sought. Finally, common sense should always be applied everyday in all their activities inside and out of home."

We also had the following from The SIMGePeD (Italian Society for Pediatric Genetic Diseases and Congenital Disabilities) regarding children with rare conditions and disabilities - forwarded to us by Angelo Selicorni. Angelo says:

"As we know, so far it seems that children are less affected, mainly in regards to the more serious symptoms of the infection. Having said that, however, it is highly recommended NOT TO lower the level of attention. These children are to be protected as much and even more than others, given their overall and general fragility."

Adapted from Document on coronavirus and children with disabilities of 12.03.2020 as distributed by SIMGePeD

We recommend that family members and other caregivers take special care in adopting prudent behaviors, aimed at reducing the risk of COVID-19 infection:

  • only take the person out of their ‘normal’ home to meet other people in case of strict need. You can stay in open spaces like gardens avoiding contact with other people;
  • prevent the person from frequenting crowded places where it is not possible to maintain the interpersonal safe distance of at least one metre;
  • carefully comply with national guidelines, with particular reference to hand washing, contact precautions and disinfection of environments;
  • avoid contact with people who may exhibit only modest respiratory symptoms;
  • reduce access to health services for all non-essential services and visits (with the exception of acute conditions, therapeutic visits for treatment stabilisation, risk of immediate complications, or feeling ill even if only presumed);
  • request an evaluation by your treating physician in case of respiratory symptoms;
  • be highly suspicious in case of a new onset of acute respiratory symptoms by having the coronavirus swab performed where necessary.

Although the data on COVID-19 disease caused by coronavirus SARS-CoV-2 in paediatric age are relatively reassuring to date, this information is still insufficient and unsubstantiated to draw definitive conclusions. 

The latest national directives identify people with complex chronic conditions as an increased risk population. In keeping with this indication, we therefore believe that people with neuromotor disabilities, chronic pneumopathies, heart disease, immune deficiencies, hereditary metabolic diseases, at risk of acute heart failure or people using a pacemaker, are to be considered populations at an increased risk.

In Western countries and in Italy in particular, people with disabilities or complex chronic conditions constitute a significant proportion of the population, both in terms of prevalence and in terms of the increased need for care. We therefore believe that the precautionary measures and indications currently given for the adult risk patients are definitely also to be applied for these 'fragile children'.

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