The representative for the International Association of Families and People Affected by Lipodystrophy (AELIP) for Peru, Mariela López, and Dr Nelson Purizaca, travelled to Piura this weekend to carry out a study on the socio-sanitary needs of the people and families living with lipodystrophy in this region.
This initiative is just the first step in the international cooperation project “Public Health Intervention for Professionals, Families and Persons with Lipodystrophy in Peru”. It will be carried out using training activities aimed at healthcare professionals in the country in the second week of April, and will be overseen by lipodystrophy expert David Araujo, and director of AELIP Juan Carrión,
This international project has the collaboration and support of the FCB World Penyes Federation, European Consortium of Lipodystrophies, the Spanish Federation of Rare Diseases (FEDER), the Iberoamerican Alliance for Rare Diseases (ALIBER), and the Spanish Society of Lipodystrophies (SEL).
The study involved a total a 14 people and, from the interviews conducted, it was found that 100% of participants suffered from Berardinelli-Seip syndrome. They also confirmed that they have not received any type of treatment.
78% of those interviewed state that they are able to travel at least once a year to attend a medical check-up. Furthermore, 71% point out that their financial situation did not allow them to lead a balanced life.
When asked about emotional support received, half of the participants reported it as good, while the other half reported it as bad.
However, 78% of those interviewed state that their social relationships have changed very little since being diagnosed.
64% of those who participated in the study consider their condition to have affected them particularly when it comes to social rejection.
78% of participants have also needed to use an information and advice service at one time or another.
Another interesting figure is that 85% of participants believe mental health support to be very important.
Lastly, 100% of participants state that medical and financial aid are the most important needs to be met within the first 6 months after diagnosis.
