Saturday, May 31, 2014

Faces of PH: Jessica Armstrong

"I was fortunate to have been in the care of a pulmonologist who was unwilling to give up on me, even when her hospital's administrators said there was nothing to be done."

Read Jessica's story

Friday, May 30, 2014

Question of the Week: Advice about Diagnosis

Question of the Week: What advice would you give to someone you know who may be experiencing PH symptoms to assure a speedy and correct diagnosis? 

Please respond in the comments below.

Learn How to Bring PHA's PSAs to Your Local Stations

Want to see PH on TV and hear about it on the radio? PHA’s Public Service Announcement (PSA) Media Blitz is an easy way for you to raise awareness to thousands of people in your area. Join us next week on this webinar with PH parent and PSA creator Steve Van Wormer to learn more about the exciting successes the campaign has had so far and how you can get involved.

Register now

Thursday, May 29, 2014

Meet Other PHers

Meet fellow patients and caregivers for support, education and inspiration! Find a pulmonary hypertension support group near you

Only 60 Miles Left! Help Us Reach the Finish Line!

Team PHenomenal Hope is going through the most difficult part of their endurance training for their cycling race across the United States in honor of the PH community. Please join us in showing them your support. We only have 60 miles left on the unity map!

Every $15 makes you the sponsor of one mile. We want to make it all the way across the country in solidarity with the team before the race begins June 14. Help us reach 3,000 miles before they start on their 9 day, 3,000 mile trek and get your name on our virtual unity map.

Sponsor a mile on the map

Tuesday, May 27, 2014

Recognizing and Coping with Depression

May is Mental Health Month. Both patients with chronic disease and their family members are at risk for depression and anxiety. Are you worried that you or your loved one is depressed? Learn what to look for and steps to move forward.

Read this article | Watch this webinar

Monday, May 26, 2014

Sunday, May 25, 2014

PH Experts Critical to Your PH Care

Doctors who specialize in pulmonary hypertension have focused their practices on the diagnosis and treatment of pulmonary hypertension. Because PH is such a complicated disease to diagnose and treat, it is important that patients suspected of having PH see a PH specialist.

Learn more about doctors who treat PH and visit our Find a Doctor Directory

Saturday, May 24, 2014

Connect with PH Peer Support

You don’t have to be a member of PHA to access the great services of a PHA PHriend! PHA PHriends are experienced PH patients and caregivers available to offer hope and support throughout your PH journey. Connect with a PHriend via phone, email or chat!

Our Patient-to-Patient Support Line is staffed by friendly long-term patient survivors. They are here to answer your PH questions, lend a sympathetic ear or help you solve problems or issues relating to living with PH. They are even available on weekends! 1-800-748-7274

PH Email Mentors are caring and knowledgeable members of the PH community. They are available to answer questions or for ongoing email relationships up to three months in length. Mentors can't offer medical advice, but they can share what they've learned along the way, point you in the direction of information and resources of value, and work with you to develop strategies for coping with PH in your own life.

The Online Support Chat tool is easy to use and a great way to meet new PHers from across the country and around the world. Just enter PHA Chat and go to the chat room for the day.

Friday, May 23, 2014

Get Active for National Physical Fitness & Sports Month

Exercise is important in maintaining a healthy lifestyle, but the symptoms of PH under exertion make it difficult for many patients to find the right type of activity. Because of the varying severity of PH from patient to patient (and other health-related factors), recommendations on exercise for PH patients are different for each individual, and may change over time depending on symptoms and response to treatment.

Your PH specialist can help you create an exercise program that works for you. Always speak with your PH doctor before performing strenuous labor or beginning an exercise regimen.

Exercise & PH information | Nutrition and Exercise e-Learning Guide

Question of the Week: Online Chats

Question of the Week: Have you attended a PHA Online Support Chat? Answer in the comments below.

Thursday, May 22, 2014

Order Your PH Survival Guide

Pulmonary Hypertension: A Patient’s Survival Guide is a resource book for patients and caregivers that was written by PH patient Gail Boyer Hayes and is published by the Pulmonary Hypertension Association. Known informally as just the "Survival Guide,” this important book serves as a soup-to-nuts guide for patients and their loved ones covering topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues.

The Survival Guide is also now available as an e-book.

Learn more and order your Survival Guide

PHer in the News: Kris Ross was Misdiagnosed for Ten Years

TheCornwallDaily.com - Do you have pulmonary hypertension? Do you even know what it is? One Cornwall woman is trying to raise awareness to explain just that. Forty-one-year-old Kris Ross was diagnosed at the age of 29. Her symptoms began at the age of 18. Because it wasn’t a very well known disease, she was improperly diagnosed for almost 10 years. She explains to TheCornwallDaily.com the disease affects the heart and the lungs, and is commonly misdiagnosed with asthma; however this disease has no cure.

Read article

Wednesday, May 21, 2014

Tuesday, May 20, 2014

Fine Just the Way I Am

Check out this story from Anna about living with lupus and pulmonary hypertension on our PH Plus blog in honor of Lupus Awareness Month.

Also, view PHA's lupus and PH resources and visit the Lupus Foundation of America website.

17 Days Left to Register for Conference

There are only 17 days left to register for our 2014 International PH Conference and Scientific Sessions!

In 2012, we had an overwhelming response to registration. With more than 1,500 people registered to attend our 2012 Conference, we had to close online registration and start a waiting list. Space is limited, so register early to reserve your spot!

Register now

News: Inotropic Agents Support Epoprostenol Initiation in Severe PAH

news-medical.net - Researchers have published a protocol for use of inotropic agents during initiation of epoprostenol therapy in patients with severe pulmonary arterial hypertension (PAH). Satoshi Akagi (National Hospital Organization Okayama Medical Center, Japan) and colleagues report their experiences using dobutamine and dopamine for haemodynamic support of 46 patients undergoing epoprostenol therapy for World Health Organization functional class IV PAH.

Read article

News: Renal Dysfunction Affects NT-proBNP Predictive Thresholds in Pulmonary Hypertension

medwireNews - N-terminal pro-brain natriuretic peptide (NT-proBNP) remains a valid predictor in patients with pulmonary arterial hypertension (PAH) who have concomitant renal dysfunction, say researchers. However, they had to use higher than normal thresholds for patients with renal dysfunction, particularly for predicting survival.

Read article

You're Invited! Team PHenomenal Hope Send Off Rally June 14

Please join us on Saturday, June 14 at 11 a.m. to help send off Team PHenomenal Hope as they begin their Race Across America. The Race course will put the team through an intense non-stop physical challenge across 9 days, 3,000 miles and 170,000 vertical feet of elevation.

Come support riders Dr. Patricia George, Anne-Marie Alderson, Ryanne Palermo, Stacie Truszkowski and their crew members as the team embarks on this grueling race to honor PHers everywhere.

Team PHenomenal Hope Send Off Rally
Saturday, June 14, 11 a.m.

Oceanside Pier Amphitheater
The Strand North at Mission Avenue
Oceanside, CA 92054

RSVP online

The physical challenges of the race mirror the life experiences of PH patients and families as they cope with the impact of PH in their lives. Team PHenomenal Hope will be competing in honor of the PH community’s daily struggle. They have been raising awareness and funds to support PHA and research to find a cure as they have been training for the past two years, and will be raising awareness in media markets along the race route. Learn more about how you can support the Race of Our Lives

We look forward to seeing you on June 14.

Monday, May 19, 2014

Check Us Out at ATS

PHA is currently participating in the American Thoracic Society's annual meeting in San Diego, Calif. Check out this weekend's activities.

Dr. Nick Kim, Dr. Ron Oudiz, Ms. Wendy hill and Dr. Jeffrey Sager speak to more than 60 participants at the successful ATS-PAR event on PH.

Dr. Vallerie McLaughlin, chair of the PHA Board of Trustees and Professor of Medicine at the University of Michigan, received the PAR Excellence Award at this year's ATS.

Dr. Stephen Mathai, recipient of a PHA/NHLBI K23 supplemental research award, presents on RV changes at ATS2014.

PHA has contributed more than $14 million in research through successful partnerships with organizations such as the foundation for the American Thoracic Society.

Rino, Jessica, Briana and Debbie promote PHA's patient and medical programming at ATS 2014.

Mother Thanks Her Son's Best Friend

Read this thank-you from one caregiver to another, her son's best friend, and submit your own Shout-Out.

Caregiver Shout-Outs

Sunday, May 18, 2014

Caregiver Support Call on Wednesday

Meet other people whose loved ones have been diagnosed with pulmonary hypertension on our monthly Caregivers Telephone Support Group call on May 21 at 1:30 p.m. ET/10:30 a.m. PT.

Register now

Saturday, May 17, 2014

Making Life Easier with PH

Stacey Moran Gausling, an occupational therapist and PAH patient based in California, discusses how to maximize living with pulmonary hypertension in this webinar recording.

Stacey talked about tips and tools to modify your environment and other daily tasks to gain more independence in everyday activities. She covered how to best plan for your day with a limited amount of energy, home modification and adaptive equipment, proper breathing techniques and more to help you adapt to living with this chronic illness.

Presenter: Stacey Moran Gausling, OT/L and PAH patient, Parkland Memorial Hospital

Watch event recording

PH Fact: Who Gets Pulmonary Hypertension

PH affects people of all ages, races and ethnic backgrounds. Although anyone can get PH, there are risk factors that make some people more susceptible.

Read about risk factors for pulmonary hypertension

Friday, May 16, 2014

Question of the Week: Conference Memories

Question of the Week: What is your favorite PHA Conference memory?

Share in the comments below and don't forget to register for our Conference in June.

PHers Share Powerful Stories with FDA

“Life with PH is a roller coaster … a ride up and down that we have to take our families on.”
—Holly Tissue-Thompson 

On May 13, PHers received a unique opportunity to speak directly with drug reviewers at the U.S. Food and Drug Administration (FDA).

The meeting was a full house in every sense of the word, with more than 100 people attending in person and hundreds more participating online via webcast. Every corner of the PAH community was represented including long-term survivors and the newly diagnosed; patients on infused, injected, inhaled and oral medications; those with minimal symptoms and those facing significant PH challenges.

FDA asked questions about life with PH and how the current treatments help. They wanted to know how people living with PH feel on their best days and their worst days and what they hope for in a future PH medication. PHers gave powerful testimony about the impact that pulmonary hypertension has had on their lives, how current treatments have helped and the challenges they still face.

“Things that didn’t even register as tasks pre-PH are now accomplishments,” said Colleen Connor.

“Fatigue doesn’t mean you exert yourself and you’re tired, it means you can sit in a chair for five hours and be exhausted,” said Nicole Cooper.

Those of you who were not able to join the conversation on May 14 can still be heard! The FDA is accepting written comments until July 14, 2014. Use these question prompts to guide your comments. When you are ready to submit them, click on the “comment now” button.

For more information contact KatherineK@PHAssociation.org or 301-565-3004 x749.


New York City Taxis Playing PHA's Public Service Announcements!

PHA's Greater New York and Philadelphia Chapter worked with PH parent and advocate Steve Van Wormer as part of our PSA Blitz to get PHA's public service announcements played in New York City taxi cabs. They will be running for the next couple weeks leading up to the Chapter's New York City O2 breathe Walk along with an ad about the walk!

This is a great opportunity for PH awareness raising -- educating millions of New Yorkers and visitors about pulmonary hypertension. If you or someone you know sees one let us know by posting to the NY-Philly Chapter Facebook page or tweet @phanyphilly.

If you are in the New York City area we also invite you to come out for the New York City O2 breathe Walk on June 1 at the South Street Seaport. The event will include a live performance by PHer and writer of PH anthem "Brave" Chloe Temtchine as well as food, activities for kids and a beautiful walk along the water. There is no cost to participate so bring the entire family and encourage your friends and colleagues to do the same. Register now

Thursday, May 15, 2014

PHA Receives Eleventh Consecutive Four-Star Charity Rating

In 2014, for the eleventh consecutive year, PHA received a Four Star rating from Charity Navigator, the premier evaluator of charities in the United States. This designation indicates that PHA "adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way," according to Charity Navigator.

"Less than 1% of the charities we rate have received at least 11 consecutive 4-star evaluations, indicating that [the] Pulmonary Hypertension Association outperforms most other charities in America. This 'exceptional' designation differentiates the Pulmonary Hypertension Association from its peers and demonstrates to the public it is worthy of their trust."

View PHA's Charity Navigator listing | Read letter from Charity Navigator's President (PDF)

Join the Young Adults Living with PH Virtual Meet-up

PHA is now offering a new quarterly virtual meet-up for Young Adults living with PH! Join members of the Generation Hope Advisory board on Wednesday, May 28 at 8 p.m. ET/5 p.m. PT.  You may join by phone or video conference.

Connect

Patient Support Call May 22

“I appreciate this opportunity to connect with others so much, I don’t want to miss a call,” shares a patient who attended the support call in April. Will you be joining Carol as she facilitates the monthly patient call on May 22 at 8 p.m. ET?

Register now

Wednesday, May 14, 2014

News: China's 'Blue Lips' Struggle for Recognition, Treatment

People Daily - Though their rare disease leaves them dizzy and struggling for breath, Chinese suffering from pulmonary arterial hypertension (PAH) have taken up the fight for recognition and treatment.

During the third Pulmonary Hypertension Day, Chinese PAH patients held a policy seminar in Beijing and lobbied for the country's decision-makers to include PAH treatment in China's healthcare program.

Read article

Foster Care Awareness

Each May, National Foster Care Month provides an opportunity for people all across the nation to focus attention on the year-round needs of American children and youth in foster care. The campaign raises awareness about foster care and encourages many more citizens to get involved in the lives of these youth – whether as their foster parents, volunteers, mentors, employers or in other ways.

For those living with PH, foster care and adoption can be a means to becoming parents. If you’d like to learn more about family planning with PH visit our website, and if you’d like to learn more about foster care as an option for your family check out Adopt Us Kids a project of the US Children’s Bureau.

Learn About Pediatric Research from the Researchers

On May 27, meet the researchers who were awarded the inaugural grants for PHA's Robyn J. Barst Pediatric PH Research and Mentoring Fund. Dr. Mehdi Fini and Dr. Melanie Nies will discuss their research and the potential applications for pediatric PH treatments in this live webinar.

Register now for the webinar
Want to learn about the Barst Fund Awardees early? Read their interview on PH Kids | Read more information on the Barst Fund

Tuesday, May 13, 2014

News: Triple Therapy Shows Promise for Severe PAH

news-medical.net - Results of a small pilot study among patients with severe pulmonary arterial hypertension (PAH) support the long-term benefits of upfront triple combination therapy, French researchers report.

Read article

Add Your Voice

PHA’s Specialty Pharmacy feedback form has received over 100 comments! Important issues are being raised and specialty pharmacies are listening. Have you added your voice?

Submit your feedback

Resources for Mental Health Month

May is Mental Health Month, a time of awareness raising about the importance of mental health to overall health and wellness and how interconnected the mind and body are.

Living with pulmonary hypertension can introduce a host of daily challenges that may put you at increased risk of depression, from the stress of shifting family relationships to the uncertainty and loneliness of living with a rare illness.

Watch this webinar on Keeping the PH Blues Away and learn more about the resources PHA provides to help you as you are living with PH. 

Monday, May 12, 2014

News: Ambrisentan Cleared for Use with Phenprocoumon

news-medical.net - Starting treatment with ambrisentan does not necessitate adjusting the dose of the oral anticoagulant phenprocoumon in patients with pulmonary hypertension (PH) who require both medications, report researchers.

Read article

Conversation with FDA Tomorrow!

Tuesday, May 13, the date of the FDA meeting on PAH is tomorrow. If you registered, don’t forget to join us and make your voice heard during this important conversation, whether it's at the in-person meeting or the virtual meeting.

Details

It's National Women's Health Week


Sunday, May 11, 2014

Happy Mother's Day to PHers Who are Moms

HAPPY MOTHER’S DAY to all the PHers who are moms out there! How do your kiddos support you in the fight against PH? Respond in comments below.

Happy Mother's Day to Moms of PH Kids

"My mom is the only person in my life who has seen every part of my journey with pulmonary hypertension. She is the strongest woman I know and will ever know. With my mom by my side as my caregiver, I wake up every day knowing that I have a wonderful support system." – Elisa

Read Elisa's blog post celebrating all the mothers who love their PH kids, no matter how old they are!

Saturday, May 10, 2014

Anuncios Emitidos por Canales Hispanos

Como parte de la campaña de anuncios empezado el 5 de mayo (el Día Mundial de HP), estamos muy alegras compartir que unos anuncios de 30 segundos sobre investigación de HP pediátrica, el diagnóstico precoz, y “Qué es la HP?” estarán emitido por los canales de Mundo Fox, Fox Deportes, Nat Geo Mundo, Fox Life, Telemundo NY, y Univisión LA hasta el fin del 2017. Un anuncio por Fox Deportes alcanza 6 millones de hogares por los EEUU.

Llama a tu estación local hoy para pedir que muestran los anuncios! Asegúralos que ya tienen los anuncios en sus “Master Controls.” Puedes ofrecer a compartir tu historia con ellos también.

IRONMAN Partners with PH in 2014

PHA Europe is proud to be the Official Charity of the 2014 IRONMAN European Tour in the Mallorca, Nice, Frankfurt, Klagenfurt, Zurich and Copenhagen races. Meanwhile, PHA South Africa and PHA Australia were also partners in IRONMAN South Africa and IRONMAN Australia!

IRONMAN athletes will be racing in solidarity with patients, and other activities are planned to encourage support for the PH cause. The Mallorca Ironman opens May 10! Look for updates by following our partners PHA Europe, PHA South Africa and PHA Australia.

Friday, May 9, 2014

Question of the Week: Sleep

Question of the Week: Which is harder, falling asleep or waking up? Respond in the comments below.

May is Lupus Awareness Month


Did you know that current estimates suggest that somewhere between 0.5 and 9 percent of patients with lupus may have pulmonary arterial hypertension (PAH). 

Learn more and connect with a PHA PHriend living with PH and lupus to gain insights on coping with multiple chronic illnesses.

FDA Meeting is This Tuesday!

If you registered for the Tuesday, May 13 meeting with the Food and Drug Administration (FDA), don’t forget to attend!

This is a rare and important opportunity for PAH patients and their loved ones to speak directly with FDA drug reviewers. The conversation will help FDA stay focused on patient needs when making decisions about the safety and effectiveness of new PH drugs.

Webcast: If you registered to participate by webcast, look for an email from FDA with log-in information.

In Person:
Tuesday, May 13; 1-5 p.m. ET
FDA Campus
10903 New Hampshire Avenue
Building 31, Great Room
Silver Spring, MD 20993

Additional information about the meeting is available as a 15-minute webinar or as a PDF. You can also contact Katie at KatherineK@PHAssociation.org or 301-565-3004 x749.

Thursday, May 8, 2014

News: Canadians with PH Face Serious Health, Social and Financial Impacts

Digital Journal - Results released from the Pulmonary Hypertension Association (PHA) of Canada's Patient and Caregiver Survey reveal that Canadians with pulmonary hypertension are struggling to live with the social, physical and financial burdens the disease places on their lives. Respondents list social isolation, lack of disease awareness and both physical and financial burdens as the top challenges that need to be addressed.

Read article

May is National Bike Month

National Bike Month is a chance to showcase the many benefits of bicycling and to encourage more people to give biking a try. With Race Across America almost a month away, National Bike Month is a perfect way to show your support for Team PHenomenal Hope.

Help save the environment, encourage healthy habits, save money or follow in the footsteps of the members of Team PHenomenal Hope. If your health allows, choose bicycling rather than driving and encourage your friends to do the same.

For tips on exercising while living with PH, check out beneficial exercises online.

Your Story + PSA = Awareness

Have you been diagnosed with pulmonary hypertension? How long did it take to reach this diagnosis? Were you misdiagnosed first? Share your story! Visit our online toolkit to find out how you can use PHA’s PSA Media Blitz to help you get the word out about early diagnosis.

Queen Latifah Raises Awareness in Honor of Her Mother

Queen Latifah recently revealed in a People magazine interview that her mother, Dana Owens, has been diagnosed with scleroderma, pulmonary fibrosis and pulmonary hypertension. Yesterday she talked about it on her show and posted the video on her website with information about scleroderma and pulmonary hypertension, including a link to PHA's website.

Watch the video then thank her in the comments on her page

PHA Founders to be Honored at NORD Portraits of Courage Gala

Pulmonary Hypertension Association (PHA) founders and sisters Judy Simpson and Pat Paton will be featured at the National Organization for Rare Disorders’ (NORD) Portraits of Courage Gala tonight in Washington, D.C. NORD will be featuring 20 people living with rare diseases who display great courage in their experiences with very challenging diseases.

“Your sister and you embody that spirit, and we believe that sends a message of hope and inspiration to others,” NORD’s message to Pat Paton said.

In 1987 when Pat was diagnosed with pulmonary hypertension, only 187 patients had been identified in the U.S. through a NIH registry and there were no treatments. She was told, as was the standard advice at the time, to get her affairs in order because she would live only another 6 weeks to 6 months.

Pat and Judy didn’t give up. Pat entered a clinical trial for the first treatment for PH, and she and Judy spent two years searching for another patient. In January 1991, in Pat’s dining room, they and two others founded what would become the Pulmonary Hypertension Association, a patient association that grew to include two medical associations, a robust medical education program and journal and over 240 support groups around the country. Both Pat and Judy continue to be active as emeritus members of PHA’s Board of Trustees.

“There are now an estimated 30,000 patients with PH in the U.S. Because of Pat and Judy and those who followed, these patients have somewhere to go for support, education and a way to fight back against this devastating disease,” says PHA President Rino Aldrighetti. “The unique collaboration they developed between patients and the medical community has led to 12 PH specific treatments and more in the pipeline.”

NORD also awarded the Pulmonary Hypertension Association the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.

Read more on the history of PHA

Wednesday, May 7, 2014

Stay on Top of Your PH

“I’m newly diagnosed, and I put together PHA’s Empowered Patient [Online] Toolkit a couple days ago. I feel so much more on top of my PH, it’s a great resource.”

Learn how you can put your own PH specific medical binder together

News: Haylee Lindsey's Transplant Waiting List Story

The San Diego Union-Tribune - Haylee Lindsey has always had a big heart. Pretty soon, she hopes it will be a whole lot smaller.

Read article

Conference is in 44 Days!

In 44 days, Indianapolis will host our 2014 International PH Conference and Scientific Sessions – the largest gathering of the PH community in the world! Are you planning to join us? Register now!

Indianapolis is also home to many other fun sights and attractions. Check out our Conference blog post to learn more about Indianapolis and places of interest that you can visit while in the area for Conference!