Over 15 thousand gardenias distributed for just under 240 thousand euros collected for scientific research and the activities of the nine provincial sections. The Sicilians responded to the appeal launched by the Italian Multiple Sclerosis Association on the occasion of the National Week on Central Nervous System Disease: to stop multiple sclerosis even with a flower, but always all together. In Italy, hundreds of thousands of gardenia plants have been distributed, raising 3 million euros for research, the only weapon today to defeat multiple sclerosis, which will make it possible to guarantee responses to care, assistance and support for people with sm on the territory, now more fundamental than ever.
The Gardensia event had an exceptional testimonial in Sicily this year: Ester Pantano, an actress from Catania, known to the general public for having been the protagonist in Makari or in the Imma Tataranni series. Ester has decided to be AISM volunteer and has not limited herself to appeals on social media, but has been in the square in Valverde (Catania) distributing over 120 gardenias. “I was very happy to help and I thank AISM for giving me this opportunity – said Ester -. It was very nice, for me it was the first experience in the square, but I think it went very well. While I was in the square and I noticed that few people were approaching the station I took a couple of gardenias and went around the street: people saw me and got involved, it was word of mouth. I must confess that I was excited “. Ester has decided to get involved because she lives closely with multiple sclerosis: two of her friends have been living with MS for some time. “My best friends are suffering from sclerosis – explains Ester Pantano -. In particular one of the two, with the passage of time, has reduced her motor skills. I have witnessed a slow evolution compared to the thousand things we did together. And now. we want to continue doing them but we have greater difficulties. But that enthusiasm we have always had has never abandoned us “.
A contagious energy that Ester transmitted to the many volunteers who in all nine capitals of the island, and in many municipalities (including some islands such as Lipari), carried out the distribution through the positions in the square or by delivering the gardenia to their homes. Also thanks to the collaboration with AMMI, the Doctor Wives Association, the Italian Red Cross and the Pro Loco. The Welcome Back Gardensia fundraising event was just one of the highlights during National Multiple Sclerosis Week ending today.
The AISM also presented the 2021 Multiple Sclerosis Barometer which provides the updated photograph of the MS in Italy. For people with multiple sclerosis, the pandemic has burned 13 percent of jobs, a percentage that doubles in young people (25 percent). 12 percent independently decided not to receive all the treatments to reduce the risk of getting infected and in the most critical moments of the emergency, 42 percent did not receive the health services they needed, despite the great commitment of the Network of Centers MS clinics. In addition, two out of 3 people with SM report that they have not received the necessary home care. Emergencies that are added to pre-existing criticalities, on which the Multiple Sclerosis Agenda led by AISM has managed to affect.
“Every day we try to respond to the needs of many people with sm – said the president of AISM Sicily, Deborah Chillemi – through the representation and affirmation of rights and, in a large part of our territory by carrying out transport, support for autonomy and the telephone report. We have faced many critical issues: the protection of fragile workers, the maintenance of care, access to medicines and rehabilitation, the priority in the vaccination campaign. None of us stopped, we tried to guarantee our answers as much as possible by maintaining constant contact, enhancing information and consultancy services, dialogue with institutions, reshaping activities to try not to leave anyone alone. We tried to intercept needs in real time and better respond to needs “.
The average annual social cost per person with sm in Italy is about 45 thousand euros. The economic impact increases as the disability increases, from 18,000-20,000 euros with a minimum disability up to 84,000 euros in the case of severe disability. Overall, the total cost of MS in Italy is estimated at almost 6 billion euros per year. The figure does not take into account the so-called intangible costs for the person which are estimated for an additional 40%, compared to the annual social cost per person. If we add this data as well, we should estimate the annual cost of multiple sclerosis at over 8 million euros, a real social emergency to be addressed: research, health, work, inclusion. Changing the reality of multiple sclerosis in Italy also means lowering the cost for the person and for the community.
The 2021 Barometer sheds more light on the impact of the pandemic. One year after the start of the emergency, 1 in 4 people with multiple sclerosis reports that the facilities and rehabilitation services are still inactive and the social assistance services are resumed in only 40% of cases. 27% of people with MS needed psychological support, almost half did not receive it. Another critical element is home care: 65% indicate that their caregivers have been subjected to excessive stress due to the additional care burden, the result of isolation
Other major and serious problems emerge from the Barometer for symptomatic drugs: a significant part, despite partial improvements recorded in recent years, is not covered by the NHS and the cost is borne by families who pay up to 6,500 euros a year out of their own pockets. .
But not only problems with access to care and assistance. The social aspect has also had its consequences from the pandemic, especially at work. About 17% of employees with MS have lost some of their income due to unpaid absences and inactivity; the figure rises to 48% for the self-employed, of whom a further 6.7% lost all their income from work. 1 in 3 workers with multiple sclerosis indicates a negative impact of the pandemic on participation and job inclusion even if 1 in 2 managed to access smartworking, a tool considered by 71% of the interviewees to be a substantially positive innovation despite the risk of loss of social inclusion.
What is Multiple Sclerosis. Chronic, unpredictable and disabling, multiple sclerosis is one of the most serious diseases of the central nervous system. 50% of people with MS are young and not yet 40 years old. It affects women twice as much as men. In Italy there are 130,000 people affected by multiple sclerosis, 3,400 new cases every year: 1 every 3 hours. The cause and the definitive cure have not yet been found but thanks to the progress made by scientific research, there are therapies and treatments that can slow down the course of multiple sclerosis and improve the quality of life of people with MS. For this it is essential to support scientific research.