It is a pleasure to welcome you to this AELIP website, as the president and founder of this association that aims at helping those affected by different types of lipodystrophies, as well as their families, all of whom we represent from the AELIP association in countries of different continents. I’m the MOM of a girl affected by a generalised lipodystrophy (Berardinelli seip), subtype II, "Celia encephalopathy". My daughter CELIA was born in 2004, and after 2 years of tests and visits to specialists, the geneticist gave us the diagnosis: Generalised lipodystrophy (also known as Berardinelli-seip syndrome). In that moment, the only thing they could inform us was that there was no treatment, the condition’s evolution was unknown, and they did not know of any other cases in Spain. Total uncertainty and lack of orientation. So, we looked for ourselves for other people who were affected by the Berardinelli syndrome, and who could explain and guide us with their experiences. And we did find others affected in Spain, and even other types of lipodystrophy that we did not know about. The need to share information vibrated among us, visibility and dissemination were essential to find out any new information. One of the people affected told us about their participation in the American clinical trial with recombinant human leptin. Even though CELIA wasn’t a candidate for this trial, we did everything we could so that it could be administered from Spain, and we succeeded.
In 2009, we started to participate in a research project (which we and society in general consider to be "great luck"). Celia stopped suffering in March 2012, with no other diagnosis to explain the neurodegeneration that she started to show at 3 years of age, and which coincided with the disappearance of the characteristics she shared with someone affected by Berardinelli lipodystrophy. We decided to found AELIP to continue and give visibility to everything learned and achieved. Conscious of continuing to promote research. From that point, we would invest our time and effort so that others could have access to new hopeful opportunities. It is the LEGACY that CELIA left us. So that no family had to suffer the uncertainty and anguish that surrounded the 8 years of my daughter's life: that’s the reason why we launched AELIP. From the association, the efforts will be united towards a common project: improving the quality of life of those affected by lipodystrophy and their families, and promoting and continuing research. To be part of AELIP, it is only necessary to enter this website to contact us, and to have the WILL to help others. We need the support and active participation of the civil society in general, so that those affected, who are very dispersed in the world geography, can feel understood and cared for, with the necessary resources for which YOU are very necessary. There are no requirements to consult with AELIP.
WE WILL BE WAITING FOR YOU, WILLING TO HELP YOU.
Naca Eulalia Pérez de Tudela Cánovas