Summer 2010 0 Volume 19 No

A newsletter of the Pulmonary Hypertension Association 0 Summer 2010 0 Volume 19 No. 3 P a t H l i g H t The REVEAL Registry: Examining PAH and Exploring Solutions H i g H l i g H t s he first U.S. registry of pulmonary McGoon, Chair of the REVEAL Steering PHenomenal Lives 3 arterial hypertension (PAH) patients Committee and Professor of Medicine PH and Adoption 4 twas created by the National at the Mayo Clinic in Rochester, Minn. Our Journeys 6 Institutes of Health in the early 1980s, “As compared to the NIH Registry Meet the Doctor 12 with 187 patients enrolled. For years, that followed only untreated idiopathic much of what we’ve known about PAH and inherited PAH patients, the REVEAL Health Matters 13 has been linked to the information Registry should provide additional Ask a PH Specialist 13 gleaned from that registry, but as information because of the large “Helpful Hints” 17 research in the field expands, our number of patients studied and the Research Corner 20 knowledge continues to grow. five-year follow-up of treated patients,” The Registry to Evaluate explains Dr. Carol Vreim, former Advancing the Cause 21 Early and Long Term PAH Disease Project Officer for the NIH Registry and International Updates 24 Management (REVEAL) is a long- current Advisor to the Medical Services Advocacy in Action 28 term observational study designed to Department at PHA. Support Groups 30 update the PAH knowledge base by According to Dr. McGoon, “The Special Events 32 examining current clinical decision- Registry is designed to: achieve a making and following patients for at broader view of the demographics and Community Classroom 36 least five years. The Registry recently clinical presentation of PAH; determine PHA on the Road 38 completed patient enrollment of more how different variables of PAH (such than 3,500 patients and is moving as the presence of scleroderma, PHenomenal Youth 41 into the final, follow-up phase. “The liver disease, treatment choices, Family PHocus 44 goals of the REVEAL Registry are to and severity of pulmonary arterial come to a clearer understanding of hypertension) affect patient outcomes; how exactly PAH presents in patients, identify why different patients have how doctors approach the disease different disease progressions; identify and their patients, and how the illness short and long term clinical predictors; behaves over time,” says Dr. Michael STORy CONTINUED ON PAGE 18 m essage from ph a’s board c H a i r Carl Hicks Most people would of Mt. Kilimanjaro. And many probably call me members of our community pretty tough. After joined them in spirit by taking all, I was a U.S. Army part in Unity Walks across Airborne Ranger and the country. It was with deep served in some fairly gratitude that I watched the difficult places. I Path to a Cure campaign unfold, knew not only how to knowing how many community marshal my soldiers, members exceeded their own but contain my emotions. I had to be expectations, whether it was tough — that was my job. climbing 19,341 feet to the top Then pulmonary hypertension came of Africa, walking in solidarity into my life. Anyone who has been at a Unity Walk or toiling through Carl in flight with PHA’s Amanda Butts reading Pathlight for a while or heard me a six-minute walk test as the one ever had to know about. My deepest speak at a PHA event, knows the story climbers made their ascent. gratitude to those who plan these of my beautiful daughter Meaghan’s you may not know that I pilot a miraculous events. battle with — and ultimate loss to — plane, but my little Cessna Skywagon There are so many others who give PH. I’m not too tough to tell you that I has allowed me to get to know many their heart, soul and time to making our have cried a million tears for her and for wonderful patients and caregivers. When community what it is by serving on our all she went through, never giving up. I can, I steer my way to support group Board of Trustees, writing for Pathlight, And not only for Meaghan, because my meetings and special events. Talk about helping out before and during our involvement with PHA has brought so deep gratitude! Support group leaders International Conference, talking to the many magnificent people into my life. do so much to end the isolation and media and legislators, and supporting Many of whom are still with us fighting increase the knowledge of support group the work of PHA in myriad other ways. A the fight for their lives, and others who participants. And those participants are deep bow to each and every one of you. no longer are. Their loss caused much something else, too. They share their Although this is the last letter I’ll sadness, but I remember them for their deepest fears and feelings and help be writing as Chair of PHA, you haven’t grace and courage under fire. each other in ways too numerous to heard the last of me. The range of But sadness isn’t the only emotion count. emotions that brought me to PHA and I feel. I also feel deep gratitude. My And special events ... There’s spurred my involvement remain and life has been enriched in ways large a reason we call them special. Our always will. I will be with you every step and small by being a part of the small, patients and their family members work of the way. w but mighty, PH community. This year so hard to create fun and meaningful we saw three medical professionals events, raise funds for PHA and spread scale great heights, reaching the top the word about this disease we wish no P a t H l i g H t: a user’s guide PHenomenal Health Advancing Community PHenomenal Family Lives Matters the Cause Classroom youth PHocus Look for this icon to direct you Look for this icon throughout m e d i c a l P rofessionals to important information for i n t e r n a t i o n a l Pathlight to read news from around healthcare providers. n e w s the world. 2 www.PHAssociation.org PATHLIGHT SUMMER 2010 PH e n o m e n a l l i v e s Uncle Draws Inspiration from Nieces Who “Lived a Little Harder” s. Dern, these were and a heavy heart.” And he good kids.” These says, “there’s a marathon in my “mwords have stayed future. For Monica, for Sara and with me since I first heard from for everyone else who can’t run Tony Chroussis in February because of PH.” about the loss to PH of his On race day — May 16 — two beloved nieces, Sara and Tony didn’t have “the personal Monica. Tony’s brother Paul belief that my leg and/or and his wife Karen were the physical conditioning would parents of these two young allow me to complete this women who were diagnosed journey.” But a number of in the spring of 2005 and who coincidences that day — passed away much too soon; including hearing a song that Monica, left, and Sara, right, inspired their Sara at age 22 in late 2007, uncle to do what he hadn’t thought possible. reminded him of Monica as and Monica at age 25 in late he arrived at the start line and 2008. seeing butterflies as he ran along the As a child, Monica already knew what she wanted to Rappahannock River to remind him of Sara — led Tony be: a doctor or a veterinarian. She applied to medical school to believe that he would run the whole way or they would after her diagnosis and was accepted, but had to drop out “carry me off on a stretcher.” No need for a stretcher, because of her condition. That didn’t stop her though, and Tony completed the race. she had nearly earned her Master’s degree in education and This was, he says, an was engaged to be married when she died. “epic moment” in his life. Sara was different. As a child she said she wanted to “I wasn’t there to win or be a butterfly, and Tony says he still has the butterfly pin set any records or to work her boyfriend made out of pasta for everyone who came to miracles. I will use the next her memorial service. Her boyfriend intended to propose to race to raise some cash. I’m her over the New year’s holiday, but she died on New year’s on a mission.” Eve. In that spirit, Tony Tony continues to draw inspiration from these two has begun to put the steps lovely young women. “They were diagnosed, and instead of into place to organize one stopping, they lived a little harder. … I can’t begin to tell you or more PHA Fun Runs in how much inspiration I draw from their unwillingness to let memory of Sara and Monica. this condition cripple them,” he says. Tony and his brother and But Tony wasn’t writing only to share this very sad sister-in-law know how story. He wrote because he wanted to honor his nieces’ important it is to help make memories in tangible ways. others aware of pulmonary A few months after Sara and Monica were diagnosed, a hypertension, and with his disc in Tony’s back herniated and he’s had several surgeries nieces as his inspiration, we since that time.

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