ALS, special recipes to preserve the joy of the table

Amyotrophic lateral sclerosis also takes away the sense of taste: as many as three out of four Italian patients they are in fact forced to deal with the dysphagiathat is, with difficulty swallowing, which often makes the very tiring meals (66%)does suppress appetite (53%) and the desire to eat in company (66%).

These are some of the evidences that emerge from thesurvey on Italian patients with ALS created by IQVIA Italia, which highlighted the daily difficulties related to food, in addition to the psychological and social impact of dysphagia. This is also why «Flavours. Bonds. Autonomy» was born. It is a selection of recipes promoted by Isla, Slafood And Zambon Italy. A kind of special menu, designed specifically for patients and caregivers by chef Cristian Benvenuto, Roberto Carcangiu And Roberto Valbuzziwith the scientific supervision of the Milan headquarters of the NeMO Clinical Centers. The selection is available on Slafood website. From the parmigiana with a modified consistency to the fresh combination of shrimp and melon, passing through the carrot cream and kefir sauce: the selection of three recipes aims to give back to the 6 thousand Italian patients the joy of sharing a meal with their family.

When Dysphagia Occurs in ALS

Dysphagia tends to appear in the early stages of the disease – in 38% of patients it occurs during the first year – and gradually worsens over time (53%). It ends up having a strong psychological and social impact: it fuels pessimism and mistrust (69%), makes you feel tired and lacking in energy (53%), also erasing the convivial value of food. «After the diagnosis – he says David Rafanelli, President of Slafood and National Councilor of Aisla aps – I have experienced first-hand what it means to be forced to give up a good meal eaten with your loved ones. So I decided to put my culinary skills at the service of the entire Italian ALS community and work together with some of the most talented chefs in our country to create recipes with modified consistencies, specific for people with ALS. This is also how this special menu was born: three easy and safe dishes to make that aim to help patients rediscover the joy of eating in company and fully enjoy every moment of their day».

The initiative comes on the occasion of the National ALS Daywhich is celebrated throughout Italy on the weekend of September 14 and 15 with the slogan “A contribution paid with taste”. During these two days, hundreds of Aisla volunteers will be in the square with information points to remember the first sit-in of ALS patients in Piazza Bocca della Verità in Rome in September 2006. Furthermore, on the night before, thousands of Italian monuments will light up in greena symbol of hope for finding a cure for this disease.

What is ALS?

Also known as Lou Gehring’s diseaseAmyotrophic lateral sclerosis is a rare and progressive neurodegenerative disease that predominantly affects the motor neuronsnerve cells in the brain and spinal cord. This leads to loss of muscle strength and muscle blockage, but does not impact cognitive, sensory, sexual and sphincter functions. It is the most common motor neuron disease with a continuously increasing prevalence. Globally, its incidence is equal to 1-2.6 cases per 100,000 people and they register 384 new cases per day. In Italy today it is estimated more than 6 thousand caseswith a forecast of approximately 2 thousand new diagnoses each year. The disease affects both sexes, with a slight preponderance in men, and in adulthood, between 60-65 years old. Its causes are still unknown but it is now clear that it is not due to a single reason but rather to the combination of several circumstances, thus making it a multifactorial disease. The main symptoms are reduction of muscle massdifficulty speaking and swallowing solid and liquid foods (the aforementioned dysphagia) and breathing difficulties. Life expectancy with ALS can be extremely variable and is generally 2-5 years after the onset of symptoms and mortality is usually associated with respiratory muscle involvement.

“The value of food is not only linked to taste, but also to what it symbolizes from a social and cultural point of view: let’s think, for example, of the meaning that Sunday lunch with your family or the holiday dinner has in Italy. So, these recipes want to help people with ALS to preserve – thanks to good food – the bonds with their loved ones and therefore also the social dimension of life” he adds Roberto Valbuzzi, Chef Patron Crotto Valtellina.

A journey through the importance of nutritional aspects in ALS

The selection of recipes «Flavours. Bonds. Autonomy» actually represents only the first stage of a journey promoted by the NeMO Clinical Center of Milan in collaboration with Aisla and Slafood to raise the spotlight on the importance of nutritional management in ALS. «The clinical experience on ALS tells us how nutrition is increasingly one of the crucial aspects in managing the progression of the disease – explains Federica Cerri, neurologist, ALS area contact at the NeMO Center in Milan and member of the Aisla Medical Scientific Commission – for this reason, with Slafood and Aisla we have started a dedicated path, which is based on clinical evidence, and which will materialize in the next few months in a training event for operators in the sector and caregivers organized in partnership with the University of Gastronomic Sciences of Pollenzo and will lead to a practical manual on ALS and nutrition”.

Amyotrophic lateral sclerosis “turns the life of the person and his family upside down – he concludes Rossella Balsammedical affairs & regulatory Zambon Italia and Switzerland – in addition to the physical consequences, there is the gradual loss of autonomy and opportunities for socialising. In line with our vision “Innovating cure & care to make patients’ lives better” we want to improve patients’ lives through scientific innovation, but also with tools capable of responding to their psycho-social needs. On this basis we have decided to support the dissemination of this menu that aims to help people with ALS not to give up the pleasure of flavours, to benefit from conviviality and to feel more autonomous in everyday life.”