The story of Daniel

my name is Daniel. I was diagnosed with Pulmonary Hypertension in 2007. It wasn’t until 2010 that I found out that my youngest half-brother was diagnosed with PH as well. He died in 2012 at age 24 while waiting for a lung transplant. Then in 2014 my other half-brother was showing symptoms and on the same day he was diagnosed with severe PH, died at the age of 39. What I have is Heritable PAH (HPAH is linked to genes that are inherited from family members). We know it came from my dad’s side of the Poole family line. My daughter also has the PAH gene.What I want to focus on is not the disease but what I have learned from it. I told myself I would not let PH win. I started to work out slowly every couple of days and now I’m working out every day. I am trying to keep active. I have been through many struggles and ended up on subcutaneous Remodulin. That was life changing but I refuse to give up! Through all the pain I will keep strong for myself and my daughter. I find inspiration from all the PH Warriors on the PH Support Group. We share our stories, battles, and wins and this helps us to find the light among so much darkness. My PH Warrior Queen Jessica who is also my best friend and my love, not only shares the same disease but the same birthday. She inspires me all the time and brings laughter into my life. My daughter reminds me that I am a great father as well. She is my princess and brings so much joy and awesomeness into my life. Not only for myself but for them I will remain strong and fight to win against this disease. In the meantime, each day is a new day for hope and inspiration from all those I come in contact with. I rejoice each morning for another day to share my life with those I love and care for. 

 

*Find others with Pulmonary Hypertension on RareConnect, the online platform for people affected by rare diseases