I'm Aware That I'm Rare: Diego Gil
Diego Gil is a pulmonary hypertension patient as well as the President of Asociación Tejido Azul, the largest non-profit PH organization in Colombia. Diego discusses the importance of information and PH awareness and how he works with other rare disease organizations to promote positive change in his country.
My name is Diego Gil and I am from Colombia.
I am a PH patient, associated with congenital heart disease. I was diagnosed in 1988 when I was eight years old. As a child, I began to feel that I couldn’t do the same things as other children. I wasn’t able to run like them. I lacked oxygen and sometimes I fainted. I also began to see that my lips and nails were beginning to look blue. Today, I am with oral therapy. In Colombia we have the majority of treatments approved by the FDA. We are fortunate, however there are obstacles in our health system that do not allow many patients receiving the treatments they need. The treatments are very expensive.
I think awareness allows people to know more about pulmonary hypertension and help patients to be diagnosed much faster, so they can obtain an appropriate treatment in time. I have always thought pulmonary hypertension patients should be the main voices of their disease. This is the reason I always share information about the disease with all the people I know, such as relatives, friends and health professionals. I also share information on social media about the disease and different awareness campaigns.
I am the President of Asociación Tejido Azul, which is the largest pulmonary hypertension patient organization in my country. We carry out workshops to guide patients and their families on how to face the obstacles of our health system, so they can access treatments timely. We establish contact with health institutions and the government entities so that PH patients receive appropriate, timely and dignified treatment. We are part of FECOER which is the Rare Diseases Organization of Colombia. We work together to promote positive changes in legislations in favor of all patients with rare diseases in my country.
Asociación Tejido Azul, is a non profit organization that was born in December 2013 as an initiative of several PH patients and our families. Our purpose is to carry out activities that contribute to the wellbeing of Colombian PH community, such as education programs to raise awareness, support groups for patients and caregivers. We currently have support groups in the six main cities of my country. We also do communication campaigns to promote public awareness of the disease. We offer legal orientation in case of obstacles in access treatment and advocacy to promote positive changes in our health legislation.
Our organization has planned several activities to commemorate World PH Day, to bring awareness about the disease. We will have conferences with medical specialists in the main cities of the country and also throughout social media, so that many people may join in our awareness purposes.
If you are a newly diagnosed patient, always remember that you are not alone. There are many people who are willing to support you. And finally I want to say that pulmonary hypertension is a difficult battle, however the strength of our community is much greater than the disease.
My name is Diego Gil and I am aware that I am rare.