INTERNATIONAL FACES OF PH

Ingrid Rivera, Honduras

Summer, 2012

Ingrid RiveraMy name is Ingrid Rivera, and I was born on August 13, 1979. I am 32 years old and was diagnosed with PPH in 2003. I live in Tegucigalpa, the capital of Honduras. As many of you know, PH doesn't have many visible symptoms. Since I can remember, I have always loved sports; in school I was on the women's football team, volleyball team and cheerleading squad. Read more

Denneys Niemandt, South Africa

When You Set Your Mind To It, Nothing Is Impossible
Fall, 2011

PH patient Denneys Niemandt (right) with his wife SonjaMy name is Denneys Niemandt, and I am a 52-year-old male from the beautiful city of Cape Town, South Africa. My journey with pulmonary hypertension began on a sunny Saturday in September 2006 when my wife, Sonja, and I went looking for a new family car. At the car dealership, I started feeling out of breath and experiencing tightness in my chest and pain in my right arm. I asked my wife twice why they were switching the lights on and off in the showroom, not realizing that I was having a blackout. Read more

Jas Kalra, India

From India, with Love
July, 2011

I love the monsoons in Bombay, where I and my wife grew up, went to college together, dated, married and had two lovely kids. But on that dark August day last year, the torrent seemed to beat my chest as I stepped outside the doctor’s chamber. In a span of a week, the diagnosis for my wife’s breathlessness had shifted from atrial septal defect to primary pulmonary hypertension. The first reaction was that of disbelief. I went in for second and third opinions fervently hoping that the doctors would dig out the ‘hole’ that the first echo had erringly put the cause to. The ‘no known cause’ line stayed and PPH was the new guest at our place. Read more

Shakeela Naz, Pakistan

April, 2011

Shakeela Naz, Pakistan

My name is Shakeela Naz. I am a 23-year-old software engineer, and I live in Rawalpindi, Pakistan. I was born with Atrial Septal Defect (ASD) and skeletal anomalies in my left arm and both hands due to Holt-Oram Syndrome (which was inherited from my mother). At age 4, my ASD was repaired via an open-heart surgery. Life went smoothly afterwards, and I lived perfectly healthy for the next 14 years. Read more

 

Hall Skåra, Norway

June, 2010 | courtesy of PHA Norway

 

Barry Sullivan, Canada

When You Set Your Mind To It, Nothing Is Impossible
April, 2010 | courtesy of PHA Canada

Barry Sullivan  

“Well, this doesn’t appear to have anything to do with your heart… I suspect you may be in the early stages of pulmonary hypertension.” Those were the words that first brought this condition to my attention: a condition that over the next few months and years would so dominate my life, my thinking and my belief in what could and could not be done.

I had just left the office of a cardiologist, referred to me by my family physician after some abnormalities appeared in my chest x-ray and subsequent EKG after a bout with pneumonia. I wasn’t suffering from any obvious symptoms, other than the occasional shortness of breath, which I attributed to weight gain over the years and to just “getting older.” It was January 2005, and I headed home thinking “hypertension; well this can’t be that bad. Watch what I eat, my salt intake, lose some weight, take a daily pill and all will be good. Just check out this pulmonary thing on the Internet and…” POW! Read more

     

Rocio Penagos Herrera, Mexico

Rocio Penagos Herrera  

I was born with an interventricular communication, and when I was five years old, I had surgery to fix it. I remember that throughout my childhood and adolescence I was always in a permanent state of tiredness. I could not run or jump like my siblings and friends because I got worn-out very quickly. My parents thought it was due to the heart surgery, and I grew up believing that I was constantly tired for that reason.

It was not until five years ago when, after several misdiagnoses, I was finally diagnosed with pulmonary hypertension. I remember that moment being very sad and difficult for my family and me. We received information about a condition that we had never heard of and did not totally understand, and we were told there was no medicine or treatment that might help me. I felt fear and sadness, and I think my parents felt that way also. None of us expressed these feelings out loud. Read more

     

Migdalia Denis, Venezuela

Un Caso Admirable de Lucha por la Vida
Agosto 2008

Migdalia Denis   La vida de Migdalia encajaba perfectamente en el perfil de una ejecutiva contemporánea exitosa con una rutina de trabajo, viajes frecuentes, estudios de postgrado, atención del hogar y crianza de los hijos, entre otras responsabilidades. Sin embargo, el ritmo de vida acelerado y agotador que llevaba se le hizo repentinamente cuesta arriba. Sin ninguna explicación aparente, comenzó a sentirse fatigada hasta para desempeñar acciones tan sencillas como caminar trechos relativamente cortos, subir escaleras e incluso bañarse.

Luego de deambular por muchos consultorios de especialistas en Venezuela, consultar sus síntomas por Internet y enviar correos electrónicos a especialistas de Estados Unidos, recibió el diagnóstico definitivo: sufría un padecimiento crónico denominado hipertensión pulmonar, una dolencia tan rara que su incidencia en aquel momento era de un individuo por cada millón.  Lee la historia completa

 

 
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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.