Carlos Cambon – Alpha-1 Leader in Action
Hola from Buenos Aires! My name is Carlos Cambón and I am the support group leader of Alpha-1 Argentina. I was diagnosed with Alpha-1 Antitrypsin deficiency in 1999, at the age of 38. At that time, I was not given that much hope of life. After an initial struggle to receive augmentation therapy in Argentina, I was able to obtain the treatment and am enjoying a really good quality of life – now 19 years later!
Because of my own experience, my vision has been to help all individuals suffering from Alpha-1. Together with other patients, we formed an Alpha-1 Association in 2016 and we seek to support patients and create awareness and find a way for better diagnosis of Alpha-1 in Argentina. Thanks to our community, made up of patients and families and the invaluable support of professionals, we have managed to cope better with the disorder on a daily basis.
I currently am a member of the Alpha-1 Global steering committee and work with all the patient leaders in the different LATAM countries. We have identified patients in: Brazil, Colombia, Ecuador, Chile, Uruguay, Costa Rica, Panama and Mexico. There are currently more than 100 identified patients in Brazil, around 70 in Argentina, and in most other countries there are between one and three.
Right now, we are working to increase testing through physician and patient education and to help make therapy available to all LATAM Alpha-1 patients. The support we provide to our community has been warmly received and with much appreciation.
This year, a special LATAM Facebook page was developed, which is serving a need for Spanish speaking members within the Alpha-1 community. Alpha-1 Spain has helped us kick-start this website and continues to post many of the articles available in Spanish.
We also launched a new website in June, which provides relevant information, resources and links to any available Alpha-1 related materials in Spanish. The new website was published a few days before the ALAT Congress in Mexico City on June 26-30.
I am the father of two sons, Mariano 24 and Santiago 21, and one daughter, Martina. All three are MZ carriers. Martina is 18 and studying international communications at the UADE University in Buenos Aires. She is very interested in assisting me in the work of Alpha-1 in Argentina, and is working with Alpha-1 Global to further her organizational experience by providing volunteer support where needed.
During the recent ALAT Congress, Martina and I represented the Alpha-1 Foundation, Alpha-1 Global and Alpha-1 Argentina. It was a busy Congress where many new contacts were made. Dr. Michael Campos conducted a session dedicated to Alpha-1 and a special Alpha-1 Symposium was organized by ALAT-NEUMOSUR, in which several Alpha-1 Key Opinion Leaders in our network participated. During this time, Dr. Alejandra Rey provided an update concerning the development of diagnosis and treatment guidelines for patients with Alpha-1 Antitrypsin Deficiency in LATAM, in which several leading doctors participated including Dr. Guillermo Menga (Argentina), Dr. Mariano Fernández Aquier (Argentina), Dr. José Jardim (Brazil), Dr. Alejandra Rey (Uruguay), and Dr. Francisco Casas (Spain), among others. All are key Alpha-1 opinion leaders within our network.
I look forward to representing Latin America during ERS (European Respiratory Society) Congress in September and participate in the Alpha-1 Global Patient Congress next April. I hope to see many of you there!