PNH - PAROXYSMAL NOCTURNAL HEMOGLOBINURIAWHAT IS PNH?PNH is an acquired disease, which means it develops in some people over time. PNH is a serious disease. It destroys an important part of your blood—the red blood cells— and can be life-threatening.PNH is serious. It starts with your blood, but it can affect your entire bodyPNH is dangerous. If you don’t take care of PNH, it can lead to serious health problems, including some that can be life-threatening.PNH is constant. Even though you can't see it, hemolysis is always happening.PNH is treatable. In fact, treatment is vital.If left unaddressed, PNH can lead to:Blood clots can block veins and arteries and lead to heart attack, stroke, and organ damage, as well as other problems.Chronic kidney disease occurs in almost 2/3 of people with PNHLung problems occur in almost 1/2 of patients with PNH. They can be caused by pulmonary hypertension. This can lead to shortness of breath and other serious health problemsFatigue due to hemolysis. Hemolysis affects the way oxygen gets delivered throughout your body. This can make you feel weak and tired to the point where once-normal, everyday activities become a struggle.OUR STORY:Hello good day to all! First of all, I would like to thank my sister Lulu Nohay and Leila Castillano for creating this campaign.Here is our story.My name is Lalaine Escano and I am from the Philippines. Last May 2015 my husband ROY ESCANO 43 years old was diagnosed with Paroxysmal Nocturnal Hemoglubinuria(PNH). A very rare and life threatening blood disorder.My husband had a chronic history of anemia since 1995. Last April of this year 2015, a month prior to his diagnosis he was in a very critical condition, had stomach problem, kidney infection, very low hemoglobin requiring multiple blood transfusions and was very weak. He urgently traveled back to the Philippines from Middle East where he works, barely making it on his way back home. The following day, he then was admitted to University of Santo Thomas Hospital (UST) here in the Philippines.Given his past and present medical history upon admission his hematologist send a PNH panel test to Saint Luke's Medical Center, the ONLY Hospital in Luzon(and maybe the ONLY ONE in the entire country) who is capable of running the test. After 3 days, the most fearful news came, he was POSITIVE FOR PNH with Total WBC Granulocyte clone size of 93.57% Type 3 which means 93% of his blood produce by his body is defective causing constant hemolysis. Since his diagnosis his health is quickly declining and had been in and out of the hospital for his PNH and for all other life threatening complications this disease is causing to his body. During the course of his hospitalization he had recieved multiple blood product transfusions. Having kidney issues and almost in kidney failure, inflammation in his stomach and presence of blood clots.His hematologist believed that he is definitely qualified for the treatment of SOLIRIS/ECULIZUMAB, the only drug of choice for PNH.With the help of his Hematologist Dr. Castillo we have been in contact with the Pharmaceutical in the United States requesting for a compassionate use of the drug to help him overcome this fight.He is our sole breadwinner but because of his current health situation he resigned from his job. I am just a public teacher here in the Philippines and not making enough money to support his on going hospitalization almost every week.The disease is slowly burning and melting him like a candle and is really taking a huge toll in our family financially and emotionally. But we will not give up and we will continue to fight for his life for as long as we could. For we are hopeful that this disease is treatable, but we can't do this without your help.So with a heavy heart I am sending you this letter to humbly request for financial assistance for his medical bills including funds for his SOLIRIS treatment. Honestly, we are financially incapable of doing this on our own. My 3 children and I, along with my husband humbly and desperately beg for any help you could provide and assist us. Any help will be greatly appreciated big or small, monetary, spiritual or sharing this campaign is huge! We will forever be thankful for all the support and help coming from you!Please do check the following links to learn more about PNH and help us raise awareness about this rare, life threatening and scary blood disorder.(www.pnhsource.com / www.aamds.org)PLEASE PRAY FOR MY HUSBAND AND THANK YOU SO MUCH FOR ALL YOUR KINDNESS AND GENEROSITY!GOD BLESS YOU ALL!Lalaine Castillano EscanoChildren: Vanna, Nicole and RJ
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