Patient story

Portia Ellis

To my friends and active members,

My name is Portia Ellis born December 7, 1943 in North Carolina.

I am a 65 year old woman. I have been on Flolan for 10 years. I have been married to the same man for 50 years, ain't God good? I have three children, two boys and one girl. I also have three grandsons, three granddaughters, four great-granddaughters and two great-grandsons. I have help with making my medications and other things from my family, including my daughter, sister, husband, niece, and sons.

I have been a born again Christian for 40-some years. I believe God knows my life and what I need and helps in every way of my life.

When I first got on Flolan, the doctors said to live life to its fullest and I have tried to make every day count for Jesus. I teach Sunday school and speech when asked. I go when I can. I love the North Carolina Mountains, shopping, talking to people, helping people and sharing with people more about the Bible.

I am a low income person with not a lot of extra money, so I can't go to the PH meetings; I have no way or the money. I pray a lot for more to be done for this medical problem. I am on oxygen at home and have a lot of doctor appointments. I travel about one hour each way. I also have liver problems so I have a liver doctor, too.

The last two years I have been a little sicker with pneumonia, flu and different viruses. I am short of breath and tired an awful lot more. My face is flushed a lot and I have no appetite. Hey, life is still good and wonderful. I am on a journey to heaven, enjoying the ride, blessings, trials and burdens. I love studying God’s word and learning more. This is my story.


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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.