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october 30
october 30
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Spread PH Awareness From Home or Wherever You Are

To kick-off PH Awareness Month, we will continue the tradition of PHacing the Future day by day with our interactive calendar which will reveal a different PH fact, resource or activity every day to help you raise awareness and live your best life with PH. Bookmark the interactive calendar.

Download one of our PH Awareness Month phone/tablet wallpapers (sized for your phone or tablet) to remind you to visit PHAssociation.org every day in November.

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What Are the Common Symptoms of PH?

Fatigue is a common symptom of all types of pulmonary hypertension (PH). Before diagnosis, 27% of PH patients reported fatigue. High blood pressure in the lungs also causes other common symptoms, such as fatigue and breathlessness.

Share this graphic to raise awareness and learn about the symptoms of PH, which are often misdiagnosed as asthma or being out of shape.

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Watch “Returning to Care: Finding Normalcy After a Pandemic”

The health care system is coming to terms with major changes in care delivery resulting from the COVID-19 pandemic. In this PHA 2022 session recording, Returning to Care: Finding Normalcy After a Pandemic and Keeping the Best of What We Have Learned,” panelists discuss the hardships and obstacles of navigating health services during and after a pandemic.

Watch this video to learn about the differences between in-person and virtual care visits and receive guidance on navigating appointments while maintaining safety. Watch now.

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PHA Supports PH Patients and Caregivers

Living with a rare disease can sometimes feel lonely. But you are not alone. PHA has a strong network of local support groups and an active online community. By reaching out to people who’ve been where you are, you will find fast PHriends who offer support, information and hope for the future.

Les Freeman, co-leader of the Central Oregon PHA Support Group with his wife Michele said, “Joining a support group and now being a support group leader has helped me find my best new normal. What I have learned from the speakers and from the group members has helped me be successful in my endeavor to be as healthy as possible.” Read more about Les Freeman’s experience.

PHA support groups across every state and Puerto Rico provide knowledge, support and empowerment to PH patients, their families and caregivers. Find a support group near you or online. For information on how to start a support group in your area, visit PHA’s Support group webpage or contact us at gro.noitaicossahp@reetnuloV

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Add Awareness to Your Virtual Meetings

Raise pulmonary hypertension awareness when you meet with family, friends and colleagues on Zoom or Skype.

If you’re in a PH Support Group, use a virtual background to show your connection to PH and PHA. Whether you’re using virtual meeting software for work, book club or happy hours, use a PH Awareness Month background image to trigger questions and share information about PH. Start the conversation with your choice of backgrounds.

Download a PH Awareness Month Zoom or Skype background image for your next virtual meeting or gathering. (Remember: if you mirror your screen, the image will appear backward to you but normal to everyone else.)

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What Is the Most Common Symptom of PH?

Breathlessness is the most commonly reported symptom of pulmonary hypertension. People with PH become short of breath because high blood pressure in the lungs interferes with blood pumped from the right side of the heart, which pushes blood to the lungs to gather oxygen.

Brief physical activity or climbing stairs often causes extreme shortness of breath, which can be mistaken for asthma or being out of shape. If left untreated, the extra burden on the right heart can weaken the heart, worsening prognosis.

Share this graphic to raise awareness of this common, serious symptom of PH. Learn more about PH symptoms on our website.

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Research Focus Strong Throughout PHA History

From PHA’s beginnings in 1991, research has been a primary focus. Today the PHA Registry (PHAR) is the largest active U.S.-based, prospective and longitudinal observational pulmonary hypertension patient registry. As of this fall, participating PHA-accredited PH Care Centers have enrolled over 2,200 individuals with PAH, CTEPH and pediatric PH due to developmental lung disease. The goals of the PHAR are to support research towards measuring and improving quality of care, understanding risk factors for patient outcomes and supporting clinical research for new therapies.

Learn more about the PHA’s research program, including PHAR.

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Newly Diagnosed? Get Your Questions Answered

If you or someone you love was recently diagnosed with pulmonary hypertension, PHA has free digital resources that can help.

Download a free copy of “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” or order a free print copy of this 60-page booklet to be sent to your home.

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Today is CTEPH Awareness Day

Breathlessness and fatigue are common symptoms of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by old blood clots in the lungs that make it hard to breathe. CTEPH is Group 4 PH.

Download and share this graphic on social media to raise awareness about the risk of CTEPH. Learn more about the warning signs and treatments for CTEPH and use PHA’s downloadable toolkit to raise awareness.

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Watch “The Gray Area: Navigating from Pediatric to Adult Care”

Transitioning from pediatric to adult care can often present new questions for youth with PH and their families. In this PHA 2022 session recording, titled The Gray Area: Navigating from Pediatric to Adult Care,” panelists will guide you through the good, bad and confusing when transitioning yourself or your teen from pediatric to adult care. Watch this video to hear firsthand experience from a PH patient on the challenges and successes of the process and from clinicians on ways to minimize potential pitfalls. Watch now.

For additional resources, view PHA’s Transitioning From Pediatric to Adult Care guide.

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Congenital Heart Defects Can Cause PH

People born with congenital heart disease (CHD), such as ventricular or atrial septal defects, can develop pulmonary hypertension. Up to 10% of congenital heart disease patients may develop PH as infants, children or adults. Sometimes when heart problems go undiagnosed, adults can be diagnosed with CHD and PH at the same time. Early diagnosis can lead to better outcomes.

Share this graphic to raise awareness of congenital heart disease and PH and read more in our free PH & CHD brochure.

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Try Yoga and Other Exercises for the PH Patient

One of the best things you can do to relieve stress is to maintain your health. To help you exercise safely at home, the Pulmonary Hypertension Association developed five exercise videos to help people with PH build strength, maintain flexibility and improve stamina. Each video comes with a downloadable PDF with questions. Speak with your doctor before you begin to exercise.

Learn more about yoga for the PH patient, download the PDF and watch the video. Additional videos may be viewed in the exercise section of PHA Classroom.

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Read Pathlight, a Members-only Benefit

When you join the Pulmonary Hypertension Association, you join a vibrant community that supports pulmonary hypertension patients, their families, caregivers, physicians and researchers. PHA empowers patients to live their best lives with PH, and we work with leading scientists to bring us closer to a cure.

Patients and caregivers can join PHA for only $15, which includes a subscription to our quarterly print magazine, Pathlight. Read a free copy of the fall Pathlight and become a member to receive four printed issues a year! Join now.

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Print Our Pocket Card at Home

We’ve gone digital with one of our most popular PH Awareness Month products. Download a PHA pocket card with facts about PH and PHA to print at home for family and friends.

The cards can help introduce PH to people who haven’t heard of the disease and don’t “see” a disability. For best results, use card stock when printing. Download and print your PHA pocket card.

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Watch Today’s Live Webinar: 2022 Focus on PH Research

Join us today at 2 p.m. ET for a one-hour, informative webinar titled, “2022 Focus on Pulmonary Hypertension Research.” During this webinar, panelists will inform the PH community about the latest advances in PH research by sharing data presented at the PHA 2022 Conference and other timely PH research advances. Panelists will also discuss their work, other published data and any potential impact on the PH community.

It’s not too late to register. Register now.

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Watch “Self-Advocacy: Get What You Need by Finding Your Voice”

As patients, we need to be able to speak up for ourselves and take an active part in the decision making around our care. This PHA 2022 session recording, “Self-Advocacy: Get What You Need by Finding Your Voice,” provides practical tips and tricks of working with your medical team, insurance and specialty pharmacy. In this session Diane Ramirez, Nikole Du Temple-Nichols and Colleen Brunetti address the mental and emotional challenges that can come with navigating the health care system and getting what you need.

Whether you are newly diagnosed or have had PH for a while, it is important to be informed and empowered. This is your journey – find your voice to face it with confidence. Watch now.

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Day of Action: Spread Oxygen Access Awareness

The Pulmonary Hypertension Association is joining the American Lung Association and many other organizations to urge Congress and the Centers for Medicare and Medicaid Services to change their policies to ensure anyone who requires supplemental oxygen can access the most appropriate type of oxygen for their needs.

This PH Awareness Month Day of Action, tell Congress we need oxygen access reform by signing the petition at  Petition for Oxygen Access.

To find more ways to take action on oxygen access reform at Phassociation.org/Advocate.

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Watch the PHA2022 Medical Update Dinner Keynote

We have made remarkable strides in our understanding of PH and available treatments, enabling patients to live longer and have a better quality of life. This year’s PHA 2022 Medical Update Dinner keynote speaker was Stephen Mathai, M.D., M.H.S., an associate professor of medicine and part of the Johns Hopkins Pulmonary Hypertension Program.

Watch this keynote to learn more about the PVDOMICS study, a multi-center study to improve understanding of pulmonary vascular disease through phenomics and the way our physical and biochemical traits change in response to genetic mutation and environmental influences. Watch now.

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Group 5 PH Risk Factors Include Sarcoidosis

Various disorders can cause pulmonary hypertension in which PH is secondary to other diseases, including blood disorders, systemic disorders with lung involvement and metabolic disorders. Sarcoidosis is an inflammatory disease that affects various organs and can lead to PH when increased pressure in the lungs causes weakening and ultimately failure of the right side of the heart.

Share this graphic to raise awareness of Group 5 PH, which can also be caused by such conditions as sickle cell anemia, chronic hemolytic anemia, splenectomy (spleen removal) and certain metabolic disorders.

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Watch “When PH Patients Need Surgery”

Watch this PHA 2022 session recording, “When PH Patients Need Surgery” to learn about what to consider when you need surgery.

Presented by Fran Rogers, M.S.N., CRNP, William Auger, M.D. and Jean Elwing, M.D., the session discusses the considerations for medical teams such as the condition of the right side of the heart, exercise capacity/fitness of the patient, the type of surgery and what PH therapies a patient is receiving will be discussed.

Watch to learn more about the various components of preparing PH patients for elective surgery including asking the right questions, involving your PH health care team(s) and safety precautions. Watch now.

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PH and Left Heart Disease

The most common cause of PH worldwide is left heart disease.

PH due to left heart disease is often caused by high pressure in the left side of the heart which results in increased pressure inside the lung. The signs and symptoms of PH due to left heart disease may sound familiar to those with heart disease: shortness of breath, difficulty breathing while lying down, swelling in the legs or stomach, abdominal pain or distention, and/or decreased ability to exercise.

Risk factors for PH due to left heart disease include age, coronary artery disease, heart failure, blockage (stenosis) or leakiness (regurgitation) of left aortic and mitral valves, atrial fibrillation and obesity (body mass index over 30). For these individuals, symptoms may improve with a low sodium diet and exercise.

Share this graphic on social media and download the Pulmonary Hypertension and Left Heart Disease brochure.

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Pulmonary Hypertension Has No Borders

Pulmonary hypertension exists around the globe. Some PH risk factors are specific to certain regions. For example, those living at high altitudes for a long period of time have a higher risk of developing Group 3 PH, which is caused when small arteries in the lungs tighten and impede the flow of oxygen, forcing blood to detour to other areas of the lungs.

One of the most common causes of PH in the developing world comes from contaminated water. Mostly in Africa and Asia, individuals may develop a severe form of Group 1 PH from schistosomiasis, a parasitic disease from freshwater worms whose eggs can obstruct the pulmonary arteries. In the U.S., the most common form of PH is from left heart disease.

Share this graphic on social media to raise awareness of pulmonary hypertension and its global impact.

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Watch “Caregivers Need Care Too”

Today we give special thanks to our family, friends and caregivers who help support individuals with pulmonary hypertension throughout the year. Thank you!

Watch “Caregivers Need Care Too,” a PHA 2022 session recording presented by Michelle F. Liu, M.D., M.P.H., and Michele Freeman, MSMHC, N.C.C., L.P.C., LCSW.  In this session recording you will learn about the importance of caregiver resilience and wellness through simple practices such as mindfulness, laughter and body-centered techniques. Watch now.

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Happy Thanksgiving

PHA wishes you and your family a Happy Thanksgiving! Remember to eat healthily during the holidays. Maintaining a low-sodium diet is important for people with pulmonary hypertension. Consuming large amounts of sodium can cause fluid retention and edema.

Try a new holiday recipe or share your favorite healthy recipe or tips that follow the guidelines in our download on sodium, diet and nutrition.

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Thank You to Health Care Professionals

One of the most unique attributes of the pulmonary hypertension community is the number of health care professionals, of all disciplines, committed to extending and improving the lives of those affected by PH.

Their commitment and partnership were critical in the launch of PHA’s PH Care Centers in 2011 which aimed to raise the quality of care and outcomes for people with PH. There are now 82 accredited centers with special expertise in PH care.

PH patients and families continue to benefit from the commitment and contributions of their care teams. Thank you!

For health care professionals interested in joining PHA for the first time, join by Nov. 30 to save 20% off your PHA professional membership. Join now.

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How to Get Involved in PH Research

People with pulmonary hypertension can participate in clinical trials that investigate potential new therapies or attempt to gain new understanding about how PH develops.

Find a clinical trial and learn about drug development from inception in the laboratory through clinical trials to FDA approval. Download questions to ask your doctor about participating in research.

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Look for Signs of PH With Sleep Apnea

Pulmonary hypertension (often Group 3 PH) is a common complication of sleep apnea. Sleep apnea-associated PH usually is mild to moderate and treatable. Continuous positive airway pressure can improve your PH and effectively treat your apnea. Talk to your doctor if you have sleep apnea and experience PH symptoms (breathlessness, fatigue, light headedness, swelling in the ankles, legs, abdomen or arms, and chest pain).

Share our social media graphic to raise awareness of this common condition and the risk for PH. Download our free brochure to learn more.

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Making an Impact during the Second Year of the Pandemic

View PHA’s 2021 Annual Report to read about PHA’s achievements during the second year of the pandemic, the support of our members and selfless efforts of our volunteers.

The PHA 2021 Annual Report highlights our accomplishments in our 30th anniversary year. Those achievements reflect how we’ve adapted to life in a pandemic, and how PHA has evolved over the past 30 years.  As PHA entered a new decade, we continued to strive to extend and improve the lives of people affected by PH. PHA staff, leadership, volunteers and members are critical to that mission. Our corporate partners and financial supporters have stuck with us, a testament to their commitment to our members and our mission.

Thank you for supporting us over the past three decades, whether you’ve stood with us since our early days or you’re relatively new to the PHA community. Read the Annual Report.

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Make a Difference on Giving Tuesday

Make a difference in the lives of pulmonary hypertension patients by supporting the Pulmonary Hypertension Association’s work on Giving Tuesday.

Your Nov. 29 donation helps PHA raise awareness, support patients, families and caregivers, and fund research that moves us closer to a cure.

Donate to provide hope to those with pulmonary hypertension.

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Celebrating Shared Experiences of Patients and Their Care Teams

A tradition since PHA’s first Conference in 1994, the Journeys Lunch highlights the experiences that patients and their care teams share. The Journeys Lunch focuses on the personal and medical journey of being diagnosed with PH, including how patients and their teams determined the most effective treatment plan and found hope for the future. Watch PHA 2022’s Journeys Lunch presentation as patient/medical professional pairs share their stories of building partnerships, breaking down barriers and planning for patients’ futures together. Watch now.