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Patient story

Silviabb Galvan

Read the English Version

"Invito a q no quitemos el dedo del renglon para poder encontrar la cura y lo q un paciente como conotros requerimos para tener una estabilidad de salud el mayor tiempo posible."

Hola, desde hace 4 años aprox, comence a sentir un cansancio muy extremo, como desde los 12 años de edad fui diagnosticada con Reynaud, siempre se relacionaba cualquier sintoma extraño con dicha enfermedad, hasta q en marzo del 2009 tuve una Neumonio q casi no la cuento y tarde muchisimo en reponerme, hasta q en el mes de junio del mismo año me diagnosticaron q parte de mis sintomas era x q tenia Esclerosis sitemica y ademas ya tenia Hipertension arterial pulmonar ademas de otras enfermedades causadas x la Esclerodermia...

Silviabb GalvanDos diagnosticos bastante fuertes de golpe fue muy fuerte, sin embargo con la ayuda de mis seres queridos,amigos, familia y mi principal motor, mi hijo, me comence a sobreponer del impacto tan fuerte, la Fe no me ha dejado y sobretodo Quiero vivir mas tiempo con calidad de vida, se q esto solamente lo deside Dios...

Me costo trabajo la autorizacion para uno de los medicamentos q al menos en este momento me ayudan, Sildenafinl, incluyendo otros tantos, pero me tropece con muchos obstaculos, afortunadamente a base de perseverancia logre conseguirlos, esto sin ver los cateterismos q en su momento no me daban la autorizacion para ello, por eso invito a q no quitemos el dedo del renglon para poder encontrar la cura y lo q un paciente como conotros requerimos para tener una estabilidad de salud el mayor tiempo posible ... GRACIAS DIOS ´por darnos la fuerza ....

 

English Version

"I invite everyone to keep our nose to the grindstone so that we can find a cure that patients like us need to have stability and health for as much time as possible."

Hello,

Since about 4 years ago, I started to feel an extreme fatigue. Since I was diagnosed at 12 with Reynaud’s, I have always associated any strange symptom with that disease. Then in March of 2009, I had pneumonia that I almost didn’t notice and thus took a long time to recover. In the June of the same year, I was told that some of my symptoms were because I had systemic sclerosis, and that in addition I had already developed pulmonary arterial hypertension, as well as other diseases caused by the scleroderma.

Although the two diagnoses were a strong blow, with the help of my dear friends, family, and my main motivator, my son, I started to recover from the impact. My faith has never left me; above all I want to live longer with quality of life, and I know that only God decides that.

It took a lot of work to get authorization for one of the medicines that at least in this moment helped me—Sildenafil—as well as many others. I came up against many obstacles; fortunately due to perseverance I was able to succeed. This was even without the catheterizations that in that moment I didn’t have authorization for. For this reason I invite everyone to keep our nose to the grindstone so that we can find a cure that patients like us need to have stability and health for as much time as possible…THANKS TO GOD for giving us the strength.

 

 

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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.