What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes for HAE patients in Cuba are that we have the opportunity to diagnose groups of patients using laboratory methods; establishing an institutional program with a small group of doctors specialized in the treatment of HAE; the use of certain medications was approved for a group of HAE patients; and access to information and Organizations that publish articles and experiences in different countries on social networks and digital platforms.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The greatest achievement in Cuba during this period of time has been the possibility of access, although just beginning, to specific treatments for HAE.
In addition, we have been added as members of the International Association – HAEi. Now we have systematic contact with the HAEi regional coordinator in order to support us and raise awareness about the disease.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
The resource that I am most proud of having achieved is to personally connect with the doctors (immunologists) who facilitate the national HAE program in my country, and to engage with them and raise awareness of the need to prepare more physicians as to how to manage of this disease; to provide support to the community of patients with HAE and their families; and to highlight the urgency to seek specialized treatments.
In addition, publishing my personal story in HAEi’s Global Perspectives Magazine allowed me to connect with other patients in my country and the rest of the world, to let us know that we are not alone.
During the recent months I have maintained constant communication with other HAE patients in my country. We have exchanged information about stories and alternative therapies, creating a support group between us.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
One of the resources that HAEi has given me is to be able to be an active member of the international Association, and to have had the opportunity to have been selected as a member of the regional delegation, representing Cuba, to participate in the 2020 World Conference.
HAEi has also helped me to insert myself into their internet platforms and include myself as a member of my regional group, where I meet and exchange, through my group leader (RPA), with other patients in the region and around the world. For more than a year they have given me the opportunity to participate in several virtual meetings of patients, to meet patients from nearby countries, giving us mutual support and to know that we are not alone and that there is a whole community at the international level with which to exchange experiences and life stories.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
My next step towards 2030 in Cuba is to legally establish the HAE Organization, to work on medical and social awareness about the disease, and to win the important battle on guaranteeing access to the use of advanced therapies in the treatment of HAE for each patient.