OUR JOURNEYS

Patient story

Marcia BeverlyMarcia Beverly

I have a rare disease and I think it's important for you to read about the details of this disease and my life.

I used to go to camp in Oklahoma every year with my 5th graders. We hiked and climbed the Arbuckle Mountains and I was very active. I did this for 9 years before transferring to another school and teaching 4th grade. During the spring of my second year at this new school I noticed being short of breath (SOB) whenever I walked quickly and then tried to talk (which is quite a bit when you are a teacher!). I began noting that I was SOB quite a lot and for things that didn’t usually leave me breathless. I was 52 and not excessively overweight.

After 15 months of many doctor visits, including a cardiologist and pulmonologist and many, many tests showing nothing amiss, and being diagnosed with asthma, I learned that I had quite a serious disease. I was in left heart failure by then, with several side effects and had Pulmonary Hypertension. It is a rare illness with statistics of 2 in a million people. I had never been seriously sick! I couldn’t be in heart failure! I spent a week in the hospital, when the only time I had been to a hospital was to have babies. Denial did cross my mind.

As the reality hit me and the tests continued I sought support and found two websites dedicated to helping people with PH. There is an abundance of caring, knowledgeable people there and I learned all I could. I was a great candidate for clinical trials of new drugs to help others. My left heart failure healed with the right drugs. I now have wonderful doctors nearby who specialize in this rare illness. I am new to the world of pulmonary hypertension. I'm lucky because many PHers have to have an invasive medicine that is infused through an IV and pump.

I was lucky I didn’t get it ten years ago when medications were few. I’m blessed to learn I have it at a ripe age when my children are grown. You can’t have children because the medications cause birth defects and the pregnancy endangers the life of the mother. Many learn of their diagnosis in their 20s, when they are just beginning their lives. Many have young children, but no energy to care for them. They haven’t been in the work force long enough to qualify for Social Security or retirement. Many are too far from PH specialists and have to deal with local doctors who don’t know anything about their disease. I hear horror stories everyday. And occasionally, about every 3 months, we get the sad news that another person we know has passed away.

I have a large network of Internet PHriends, as we call ourselves. There are 6 approved drugs out now with many, many more in clinical trials. I have been able to participate in two clinical trials. I take a new drug, Letairis, in which I was in the clinical trial for 2 years. I am currently taking oral remodulin, which is in clinical trial.

When you have a disease this rare you want to do all you can do to help others who are fighting for their lives. There is hope. Most of the people I know with PH were told they had 3-5 years to live and to get their affairs in order. Fortunately I was not told that and more people are living longer with this disease than ever before. I plan to be around for a good, long time. There is hope and that's what my life has now become -- living for and fighting for hope and a cure.

Marcia Beverly

 

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NORD

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.