Patient story

Regina O'Neal

Regina O'NealDear PH,

There is one thing that I know for sure. I am a PH patient, and I really need a cure. Things happen in life and I may not have a choice, but I will not be silenced. I will exercise my voice. PH is my enemy; it is not my friend, but I’m not afraid of it because I know I’m going to win.

Before I met you, I had a great life, but I realized — when I opened my eyes — to accept my blessing and stop second-guessing about what my life could have been. I will not live my life looking in the rearview mirror. I’ll keep fighting so my vision is clearer.

There are days when you try to wear me down, and I forget to smile. Instead I wear an ugly frown, but today I came to let you know your time is limited and I can’t wait for you to go.

On days when my body is tired and I want to rest, you become the reality that you are my biggest test. You have me feeling inadequate, unable to fight, but that’s when God steps in and shows me the light. The light is a reminder and it lets me know we have a lot of work to do. So let’s go.

PH, you look at me and say, “Now how do you think your going to win this race, when you walk at such a slow pace?” Oh, but that is where you are wrong. I have a lot of PH friends, and together we are strong. We are motivated, dedicated and focused on you, and we’ll keep fighting until you are through.

Before I go to bed each night, I pray for all the PH Angels who inspire me to fight. In my prayers I ask for a breakthrough to finding the cure for me and for you. So on this day I declare and I decree as long as there is breath in my body, there will be a winner in me.


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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.