Hello, my name is Irene Delgado. I was born in Madrid and I´m Social Worker. 21 years ago, I was diagnosed with Pulmonary Hypertension after a year and a half of medical test.
When they told me what I had, although at first it turned out to be a relief to know what was wrong with me, the fear was enormous mainly due to the uncertainty when facing something unknown.
When you try to find information, things get worse, there is no cure, It´s progressive, It´s disabling … and suddenly you realize that you have gone from being a normal person to a sick person tied to a prostacyclin pump. You can say that it changes your life, without a doubt.
Fear is compounded by misunderstanding, the people around you do not see you sick and fall into topics of “it will not be so serious, if you look great”, and instead of helping, it makes you isolate yourself more with your illness. Therefore, you need to talk to people who have the same disease as you so that they understand you. When I was diagnosed, there was nothing in Spain, no association and meeting like-minded people was very difficult. That’s when I decide to found an association, to group patients. The National Association of Pulmonary Hypertension (ANHP) was born in 2004 and was the first association of Pulmonary Hypertension patients in Spain. The beginnings were not easy at all, social networks were not as they are now, there is no excess solidarity and less with a disease little recognized in the media, but little by little and thanks to the first partners who accompanied me, we built what is now the ANHP . A pioneer in professionalization, social worker, psychology, legal advice, author of guides and manuals that have been translated into different languages, and organizer and host of the celebration of the First World Day of PH in 2012, we made history.
When I contacted with PHA Europe, there were only 7 countries and with Spain we were 8, very different from now. I would like to achieve to Dominique and Pisana for their help in our first steps into the European association.
4 years ago, I left the president charge in the board, but I follow working like a volunteer. Many years have passed since my diagnosis and since the ANHP was founded, and I would like to tell you that I am very proud of how I dealt with the disease and of having been the leader of the first association of Pulmonary Hypertension patients in Spain.