by Carmen Lozada
“My story about what gives me hope about pulmonary hypertension (PH) started 12 years ago. A story that until the beginning has good and bad experiences, moments of learning and where I felt different emotions. But the most important thing is that, it has fulfilled its purpose of making me strong, positive and a woman with a PHace of Hope.
I was diagnosed with PH at a very advanced stage on July 2007, after presenting PH symptoms for six months. Being totally unaware of the condition, I was evaluated by several doctors, including pulmonologists and cardiologists in the ER after three episodes of syncope. I started treatment without any improvement and poor results. The condition was progressing rapidly. That was the reason I was recommended to be evaluated at a hospital or specialized center in PH for a lung and heart transplant evaluation in the U.S.
On November 2008, I arrived in New York City. After a complete evaluation that included all the necessary studies, the diagnosis of primary idiopathic pulmonary hypertension in Class IV was confirmed. So, I started new medications for this rare, invisible and incurable disease. Then, little by little, gradually, I began to improve, and I felt more able to carry out the necessary tasks in my daily life.
In the middle of 2009, after finding accurate information about my disease on PHAssociation.org, and surviving my own personal hardships, I decided to participate in different active support groups in New York City that let me see and feel that other PHers need help in different ways to understand, accept, deal with and manage their PH. Since October 2011, I was honored to lead the first and only Hispanic support group for patients with PH in New York City. Language is one of the strong barriers of the Latin population that is Spanish speaking, which interferes with their ability to have effective communication.
Once I knew the phenomenal world of the Pulmonary Hypertension Association (PHA), I became involved in bringing awareness of and spreading the word about PH around the community. For the last eight years, my PH pathway includes one PHA on the Road and four PHA International PH Conferences, where I volunteered to help assist and translate for Spanish speakers and be a speaker on the Spanish sessions, and leader for Spanish support groups. I also received a Tom Lantos Grant that let me develop an educational poster and table stand about PH symptoms, causes and diagnoses in Spanish that were placed in hospitals, emergency rooms, doctors’ offices, pharmacies, laboratories and government offices with the purpose to educate and raise awareness about PH throughout the Hispanic population. Also, with the support of PHA, I have had the opportunity to help translate conversations, pamphlets (CTEPH) and presentations being a member of the Support Group Leader Advisory board and to be part of the Spanish Support Line.
I had to learn to let go of many lovely people, things, events, changes and feelings to struggle strongly with my PH daily life. I feel that I can serve as a motivational and inspirational PHace of Hope for others, patients who do not accept their fate and want to fight PH. I am pleased with the work done so far and seeing others PH warriors maintain a better quality of life through my support. Every day, I feel blessed for my life, supporting and empowering the PH community and continue to full-fill hope that soon, we might have a cure.”