Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) decided to organise a special event to gather and honour Pompe patients and their families on April the 5th. This year April 15, the official date for International Pompe Day, is in the Holy week (the week before Easter), a very important week in Colombia. This is why the decission was made to have the celebration earlier.
In Colombia 22 Pompe patients are known. At the patient meeting in Cartagena the emphasis will be on the need for comprehensive care, involving both the patient and the caregiver. At this meeting a physician, physical therapist, an occupational therapist, a dietician and a psychologist will present on the topics involved.
Following the slogan of International Pompe Day 'Together we are strong', ACOPEL focusses on the importance of the caregiver to the Pompe patient. Caregivers (often parents, partners and other family members) offer an important part of their life to improve the quality of life of Pompe patients. In many situations it is thanks to caregivers that Pompe patients can have a life. Therefore the final ceremony is a tribute to the caregivers from the patients. Previous to this ceremony caregivers will have a 'wellness' afternoon where they will have the opportunity to get a 'make over' with make up and a hair session, followed by a photo shoot. With this event ACOPEL wants to send out the message that Pompe disease requires comprehensive care and that caregivers play an essential role. It is important that public institutions learn that comprehensive care is important and much needed by patients and their families.
Media are invited to attend at this event and ACOPEL will make a clear message to be broadcasted on national television to generate awareness about Pompe disease among the general public.
Besides the activities ACOPEL works hard to find Pompe patients in Colombia. Many Pompe patients do receive a wrong diagnoses and therefore can't be treated in time with all the consequenses it has for patients and their families.
Last year ACOPEL did use media too to get attention for Pompe disease. Below you can read a newspaper article and listen to a radio broadcasting:
- Newspaper article (in Spanish): El Pompe, esa dolorosa debilidad (El Tiempo, 07-08-2013)
- Radio broadcasting (in Spanish): Fernando Rodriguez habla de la enfermedad de pompe Colmundo (31-07-2013)