2006 Conference Story

Lian M. Latham, BA, RN

There are days when we, the medical professionals, wonder if all our efforts really make a difference. Most of us went into medicine and nursing for altruistic reasons in the first place. But we sometimes become frustrated by systems and bureaucracies that take us away from the primary focus - the patients. It is easy to get lost in the sea of responsibilities we carry each and every day. Holding people's well-being (and their very life itself ) in our hands is a daunting task. Fighting each and every day for our patients. For everything. From prescription authorizations to attorney letters to all-nighters for grant proposals to education for other professionals who never even heard of PAH to time away from our families to attend support group meetings, conferences, the list goes on and on and on.

We're all in this battle together...........

The "laboratory" professionals work diligently in the face of significant obstacles to fight to find an answer - an answer to the cure for this nasty disease. They don't even know the people they are fighting to save. But they keep searching. And fighting. They are like the covert spy missions and battlefront strategic team for PAH.

The "bedside" professionals work day after day in the trenches with the patients. We do know the names of the people we are fighting to save....and the name of their grandchildren and the dog on! Our actions make them feel better - both psychologically and physically. We're like the infantrymen of PAH.

The "families" of patients are the true backbone support of PAH. They stand by the patients every day, providing solace and care to those who are in need. Often, they sacrifice themselves in many ways to make sure their loved ones get what they need. They are like the battlefield medics for PAH.

The "patients" are the reason for the battle. They are the prized possession - the reason we are fighting together. I can not even imagine how tired they get in this battle. From fighting insurance companies to prejudices, misunderstandings, ignorance............and even the very breath of life. Every minute, every day.

Being at the PHA Conference re-energized me and gave me back my focus to fight. I have never practiced in an environment where I felt such "belonging". I truly felt as if I had come home. No pompous arrogant physicians, no pretentious medical professionals, no angry blaming patients. Just a camaraderie of one big unit - fighting the battle together. Though many of us are tired and sometimes suffer from "battle fatigue", we continue to forge ahead. With whatever it takes. Now that we have dispersed back to ur own "homefronts", remember:

Don't stop fighting. We will perservere and crest the top of the hill.......together!!

This is what the 2006 PHA Conference did for me. Thanks to all who made it happen.

Lian M. Latham, BA, RN
Clinical Coordinator
Pulmonary Vascular Division
University Hospitals of Cleveland
Cleveland, OH


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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.