Those who suffer from this pathology often find it hard to swallow due to weakened muscles. An initiative to overcome difficulties and avoid nutritional deficiencies
Living with thespinal muscular atrophy (SMA) often means having to deal with dysphagia, or the difficulty in swallowing solid or liquid foods: in these patients, feeding becomes a real challenge and to help them start the SMAnia of taste project, with the patronage of the main patient associations. The target, through the initiative’s website (care.togetherinsma.it), give back some joy at the time of the meal as well as ensuring balanced nutrition, as he explains Michela Cocciacoordinator of the Integrated Center for Neuromuscular Diseases of the United Hospitals of Ancona: Dysphagia is very common in SMA and can appear in children and adults, with varying degrees of severity. Those involved in patient care must learn to manage it correctly to ensure the right supply of nutrients and good hydration, but also to take care of the emotional aspects related to the pleasure and conviviality of food.
Emotional and social sphere
Eating doesn’t just feed, too taste for food and being together with family members, but in patients the whole emotional and social sphere of nutrition can be lost precisely because of dysphagia, which increases the sense of loneliness and worsens the quality of life, but also health. In those with SMA, the muscles that are too weak can compromise the ability to chewto move the tongue well and swallow, alterations in the posture of the neck and trunk can complicate the passage of food, furthermore the malocclusion and the asymmetrical contractures of the chewing muscles further aggravate things, leading to a deficit of opening the mouth. Slowly, sufferers tend to eliminate the foods that create more difficulties and to eat and drink lessexposing oneself to the danger of malnutrition and dehydration, in addition with the alterations in swallowing the risk of respiratory infections increases: this is why experts recommend an assessment of the extent of dysphagia every six to twelve months and because for the SMAnia di gusto project, together with a professional chef, video-tutorials and video-recipes were created designed for patients and their caregivers.
Plates balanced and easy to send down
Balanced and easy-to-swallow dishes for children and adults, of the right consistency but tasty for the palate: in moderate or mild forms of the disease it is sometimes enough to change the consistency of the foodfor example by choosing pure, homogenized and pureed, otherwise it is still possible to facilitate consumption with some precautions such as the use of thickeners, in case it is difficult to ingest liquids. To find the right density the double food pyramid for solids and liquids from the
International Dysphagia and Diet Standardization Initiative (IDDSI)
which identifies seven different consistencies more or less suitable for the various stages of dysphagia: depending on the viscosity that can be tolerated, IDDSI experts indicate which foods are always better to avoid, practical indications are available on www.iddsi.org.
The information campaign
The disease progressively weakens the motor skills, but the course can be arrested thanks to early diagnosis with newborn screening on a drop of blood: he reaffirmed it the information campaign Let’s Play in Advance by SMA Families and the Rare Diseases Observatorywhich recalls how the therapies, started before the symptoms, can stop the progression of the disease or make it manifest in a mild form. Today the voluntary and free genetic screening test is available in Lazio and Tuscany where in two years over 92 thousand children were examined, identifying 15 children with SMA; screening from September possible
in Liguria, Piedmont and Puglia they are gearing up.
February 11, 2022 (change February 11, 2022 | 19:43)
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