PHA MEXICO / HAP MEXICO: THE STORY OF PHA MEXICO
By Cecilia Martínez Ramírez, Founder
“If we walk together, we will be able to overcome obstacles to obtain our goals and dreams. Being ill does not mean that we have to lie in bed. Being ill is a reason to move ahead.”
My name is Cecilia Martínez Ramírez, I am a Registered Nurse and PAH patient. I started having health problems when I was 15 years old. At the time I was a student and I was very active. I practiced athletics and rhythmic gymnastics. All of a sudden I started fainting, had constant respiratory problems, nose bleeds, headaches, dizziness, accelerated heartbeat and chest pain. I saw many specialists and they all gave a wide range of opinions. Because of this, I lived for two years going from one doctor to another, from one health institution to another. I tried everything including alternative medicine and spirituality centers.
My health problems progressed until I could no longer be on my feet. Finally, I was admitted to a hospital. There, after many examinations, a sports medicine doctor realized that the problem did not come solely from my heart. He sent me directly to the National Heart Institute in Mexico City; on my first visit there, I was diagnosed with primary pulmonary hypertension. I was 17 years old and had lost two years of my life.
At the National Heart Institute, where I spent nearly two months with several examinations and catheterizations, I responded to vasodilators. When I learned that pulmonary hypertension was considered a terminal illness with a somber prognosis, the diagnosis broke my heart. I experienced intense emotional changes. I became sad and depressed; all my dreams of being a great sportswoman came crashing down. Being an uncommon disease, there were no approved therapies and the treatments I needed were very expensive.
I have fought hard to control the PH, and I have learned to live with it. I wanted to lead a good quality life and that was the main reason I was inspired to start a support group so that others would not have to live alone and go through the difficulties I had experienced. In Mexico, only a few centers specialize in PH diagnosis and treatment. Moreover, until 2006 there were no therapies approved for its management.
I originally created the support group in December 1994 to give information to patients and their relatives about the disease and to let them know about advances in research and new treatments. Soon afterwards, the group realized that an association was needed to spread all this awareness nationwide and to let all PAH patients in Mexico know about new options for their treatment.
In May 2006, I, along with patients and doctors from the Cardiopulmonary Clinic at the National Heart Institute in Mexico City founded The Mexican Pulmonary Arterial Hypertension Association (MPAHA). Our mission is to give assistance, support and hope to PAH patients and their relatives, through interaction with specialized physicians. We give expert, truthful and objective information to patients and their relatives about PAH, its symptoms, treatment options and doctors involved in their care.
To date, PHA Mexico has over 100 members, including patients, families and medical personnel. PHA Mexico is a rapidly growing organization and, with the involvement and dedication of patients, caregivers and medical professionals we are making great strides in improving the quality of care for PH patients in Mexico.
Although we are a relatively new organization our goals are lofty; we want to get the patients and their relatives involved in the creation and administration of the association and we are working towards coordinating lectures and meetings with patients, their relatives, the medical community and the general public to raise the levels of PH awareness in Mexico in order to achieve earlier diagnoses and more effective treatment for patients.
I have lived 26 years with this suffering. Helping to create MPAHA and working to improve the lives of all Mexican PH patients has brought me a sense of purpose and joy. It is hard work, but one step at a time we are working to change the lives of patients in Mexico for the better. In my struggle with PH, I have learned a lot and have changed my outlook on how I deal with my disease: A disease is not a good reason to not make your dreams come true; a disease just changes the path that leads to them.