While the ‘fight΄ to change the name and what the disease stands for, has been going on for years,the disease has reached alarming conditions.Non- Alcoholic Fatty Liver Disease prevalence exceeds 25% in European adults, being higher in those with metabolic syndrome component(s)-related comorbidities.
We will not analyse the different aetiologies of Non- Alcoholic Fatty Liver disease or how it has described by different experts as NO single factor can explain the whole spectrum of disease.
What we want to emphasize is that the disease has alarming trends and serious effects on our daily lives as patients or patient representatives and not only as it has psychosocial negative influences to children and adolescents (stigmatization, labelling, bulling etc)
The problem and proposed solutions
Reveal / documentation of the problem
- The ELPA working groupon Non- Alcoholic Fatty Liver disease / NASH together with the ELPA scientific committee and the ELPA board support, haveconducted a survey.
ELPA ‘Socrates Survey’
Background:Non-alcoholic fatty liver disease (NAFLD) is excessive fat build-up in the liver without another clear cause such as alcohol use.
Aim: To evaluate the knowledge of the disease in the general population and their own opinion on the etymology of the acronymous of the disease (NAFLD)
Methods: A total of 650 people from 8 different countries were participating in this survey. All those who took part were over 18 years of age and it was done with their consent. Due to the Covid pandemic, the ELPA network was used, it was in a form of an electronic multiple-choice questionnaire translated into 8 different languages. Danish, Spanish, English, Hebrew, Arabic, French, German and Greek.
Duration: 1 Year (2021- 2022)
We named it so because we used the exact same method that this great Greek figure used to get results.’ The technique of simple questions.This time from patients to patients.
The survey was designed and evaluated by the ELPAs scientific committee and the ELPAs NAFLD/NASH group
In explaining what the acronym NAFLD means and whether it is a terminology that expresses them if they were patients, they did not agree with the term. To the question why they do not agree? The answer was that mentioning alcohol automatically stigmatizes people.
- The ELPA working group on Non- Alcoholic Fatty Liver disease / NASH together with the ELPA scientific committee and the ELPA board support, have conducted a questionnaire
This time the questionnaire was among patient representatives & associations from 20 countries,KOL, the European Patients Academy on Therapeutic Innovation (EUPATI)and some other associations as Obesity, Paediatric Associations etc.
We wanted to assess the implications or the impact of this disease and its name of ΝON-Alcoholic….Τhe result of this questionnaire highly anticipated:
The Non – Alcoholic disease is a stigmatizing disease. If a child has the disease and is overweight then he can become a victim of marginalization, bullying and teasing. It can make your life difficult in all areas.
Plans/ projects to solve the problem
- STOP the progression of the disease. Programs based on awareness of a proper nutrition and exercise
- Fatty Liver Future? Step out!!!
Program involving parents (Parents Association), school trainers-exercise programs, nutritionists. Strengthen the role of the school nurses.
Knowledge, education. Using an electronic platform where everyone can get the right, correct information according to the guidelines.
Young patients to share their experience and how they deal with these (videos,lectures… )
- Manifesto of the disease
