Friday, September 28, 2012

Faces of Pulmonary Hypertension: Nicolene Muller

A journey to diagnosis...

"My GP did an ECG, but could not find anything wrong. He also sent me for an X-ray of my lungs and heart to see if I possibly had asthma. He said I was overweight and needed to do more exercise."
-Nicolene Muller

Read full story

Butler County Woman Thrives After Surgical Innovation at AGH Removes Life-Threatening Blood Clots From Her Lungs

(HealthCanal) - When Margaret Pastorius learned from doctors at Allegheny General Hospital (AGH) that she was a good candidate for an innovative but complex surgical procedure that could dramatically improve her odds of beating a rare, life threatening lung disease , her immense relief came with one non-negotiable stipulation. Despite rapidly deteriorating health, she would not undergo the treatment until the expected birth of her first grandchild. Read article

Thursday, September 27, 2012

Long-Term Care 101 from the NIH

The National Institutes of Health has a website about long-term care... from what it is, how to plan for it, and how to pay for it. Long-term care can include meal delivery and transportation services.

Check out the NIH Long-Term Care website

Wednesday, September 26, 2012

Fact of the Week: Women and Pulmonary Hypertension

The Registry to Evaluate Early and Long-term Pulmonary Arterial Hypertension Disease Management (REVEAL Registry) is the largest registry of patients with PAH and is analyzing data of 2,525 adult PAH patients between 2006 and 2007. The REVEAL Registry uncovered that women are 4 times more likely than men to be diagnosed with pulmonary arterial hypertension (PAH).

Learn more about possible risk factors for pulmonary hypertension

Make a Personal Medical Binder

Coordinating your healthcare doesn't have to stand in the way of doing things you love. The Empowered Patient Online Toolkit helps you create your own pulmonary hypertension-specific medical binder!

Download the toolkit today!

Tuesday, September 25, 2012

Awareness Month Tip: Make A Big Difference without Breaking a Sweat!

Want to make a big impact this Awareness Month, but don’t have a lot of time? Tell your pulmonary hypertension story through a personal fundraising page to educate your friends and family and raise money to fight PH. It’s quick, it’s easy and it’s secure!

Get started by going to www.FirstGiving.org/PHAssociation to create and share your personal fundraising page today!

For more information, contact Ellen Leoni at Giving@PHAssociation.org or 301-565-3004 x756.

Event this Saturday: Roanoke, VA, PHun Walk for Pulmonary Hypertension

Join us THIS Saturday at the Roanoke (Virginia) PHun Walk for Pulmonary Hypertension! After the walk, stick around for refreshments, a raffle, kids activities and more. This event caps off a month of ten special event fundraisers throughout the country!

Learn more or register

Monday, September 24, 2012

Webinar Wednesday: Top 10 Ideas for Awareness Month

What are the top 10 ways to get involved in PH Awareness Month this November? Join this Wednesday’s webinar to find out!

Get in on the (PH Awareness Month) Action!
Wednesday September 26, 2:00 p.m. ET/11:00 a.m. PT

Register now

Monthly Patient Telephone Support Group This Thursday

No Support Group in Town? Pick Up the Phone!
Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easier to participate regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group
Thursday, September 27, 8 p.m. ET/ 5 p.m. PT
On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register

For assistance: Debbie, 301-565-3004 x755

Still swinging: Golfer Diagnosed With Deadly Disease Outlives the Odds

(The Portland Daily Sun) - Jeannette Morrill comes out swinging. Once a tri-sport athlete in college, she can only play golf these days. But she knows she should consider herself fortunate. Diagnosed in 1976 with a deadly disease with less than a three-year life expectancy, Morrill is now in her 37th year battling the illness and the odds.

Morrill wages her personal war against Pulmonary Arterial Hypertension (PAH, also known as PH) in a public way, however. She has helped organize a forum on PH, as well as a golf tournament to raise money, awareness, and to share stories of survival with other PH patients. Read article

Program Helps Patients, Parents Cope

(Delaware Online) - Kristen Dunne was terrified the first time she heard doctors suggest palliative care for her critically ill daughter. Molly was 7 years old, but her lungs, heart and other parts of her body had become severely weakened by pulmonary hypertension, a blood vessel disorder. Her doctors said the palliative care team at Nemours/Alfred I. duPont Hospital for Children could help ease her discomfort and improve her quality of life, while helping her family make the most of her remaining time. Read article

Artery Size May Predict COPD Flares

(MedPage Today) - In patients with chronic obstructive pulmonary disease (COPD), unusually large pulmonary artery diameter was strongly associated with future risk of serious exacerbations, researchers said. Read article

Former Miss Puerto Rico is Terminally Ill

(Fox News Latino) - Miss Puerto Rico 1985, Iris Matias, is suffering from terminal pulmonary hypertension which has her bedridden and dependent on a machine connected to her heart that provides the necessary medications to keep her alive. Read article

Friday, September 21, 2012

Having Dreams After Pulmonary Hypertension

From Michelle Joy Guerrero on PHA's Generation Hope blog...

Having a significantly diminished ability to dream and dream big is common among newly diagnosed PH patients. There will be a time when you can come up with something you want to do, but you start questioning right away whether or not you can do it... Planning your whole life all over again is something your mind cannot react to immediately because of the limitations that you have, but then you have to.

Read full blog post

Watch Video From Central Florida Event

On Saturday, Sept. 1, more than 150 people gathered around Lake Hollingsworth in Florida to run/walk for a cure! The inaugural Central Florida PHun Walk & 5K, hosted by Joy Morgan and the Central Florida PH Support Group, raised more than $8,000 for PH research and patient and family serving programs. Check out this video of event highlights, compiled by Dr. Ernesto Uy, a primary physician in Florida.

Thursday, September 20, 2012

PH Fact of the Week: PH Associations Around the World

Pulmonary hypertension affects people of all ages, races, and gender across the globe. The Pulmonary Hypertension Association has partnerships with 26 PH associations worldwide and can connect you with other resources as well.

Live outside the U.S.? Find an association near you
Live in the U.S.? Find a support group near you

Wednesday, September 19, 2012

PHun with a Purpose

During Pulmonary Hypertension Awareness Month this November, add your own twist to PHA’s ideas for educating your community. Awareness table + cupcakes? Classroom presentation + trivia? Awareness raising can be phun!

Get started raising awareness in your community

Tuesday, September 18, 2012

Get in on the (PH Awareness Month) Action!

Wednesday September 26, 2:00 p.m. ET/11:00 a.m. PT
When you raise awareness about PH during Pulmonary Hypertension Awareness Month in November, you're part of a global team thousands strong. Get your awareness-raising juices flowing and your how-to questions answered with this interactive webinar. Register now

Portland, OR "Thirsting for a Cure" Special Event on Saturday

We're "Thirsting for a Cure" this Saturday, Sept 22 at the beautiful Alexana Winery located outside of Portland, OR. It's not too late to support or attend! For more information about this fundraiser, check out the event's website. Hope to see you there! 

Monday, September 17, 2012

Caregiver Telephone Support Group Meeting This Week

Caregivers Telephone Support Group
Wednesday, September 19, 1:30 p.m. ET/10:30 a.m. PT

Call in toll-free to connect, learn and share strategies and experiences about caring for an adult with PH. The call lasts for one hour — join us for as long as you like.
Learn more

Friday, September 14, 2012

Shine the Media Spotlight on YOUR PH Story

Would you like to see more stories about pulmonary hypertension in the media?  With advice and materials from PHA, you, and PH, can make the news. PH patient Jeanette Morrill and Mollie Katz, PHA’s vice President of Community Engagement, will share strategies for catching journalists attention and getting media coverage during this informative webinar on PHA Classroom next week.

Shine the Media Spotlight on YOUR PH Story
Thursday, Sept. 20, 3 p.m. ET/12 p.m. PT
Learn more and register

PHers Drum Up Support for PH Bill in Their Congressional Districts

"People probably think, 'What difference can I make?' Listen, I'm one person. I've been in that congressional office and I've gotten a Member of Congress to co-sponsor after my meeting. If you get to one person, you make a difference," Nicole Cooper said about gaining support for the Tom Lantos PH Research and Education Act. Nicole and other members of the PH community have recently visited with their Members of Congress.

Learn about their visits with their Members of Congress

New Arterial Insights Portend Potential Treatments for Life-Threatening Diseases

(Stanford Medicine Scope Blog) - Some very serious diseases – aortic aneurysm, coronary artery atherosclerosis, and pulmonary hypertension, to name examples – involve pathological changes in the size and structure of the layers of smooth muscle that surround arteries. These smooth-muscle layers’ carefully coordinated contractility is essential to the regulation of blood flow. Read article

Thursday, September 13, 2012

Attention Federal Employees, Active Members of the Military and Postal Employees!

The Combined Federal Campaign (CFC) is the workplace giving program for federal employees, military personnel and postal workers. As the world’s largest workplace giving campaign, the potential to raise funds for PHA is nearly limitless. Eligible employees can designate PHA with CFC number 12097 to support vital research and provide patient support, educate medical professionals and raise awareness of pulmonary hypertension.

If you are a federal employee, or you know a federal employee interested in promoting PHA in their workplace, visit our website or contact Ellen Leoni at EllenL@PHAssociation.org or 301-565-3004 x756 for free fliers to display in your office.

Bring a Six Minute Marathon to Your Town

Want to raise awareness about pulmonary hypertension with an activity that’s easy to understand? Consider holding a Six Minute Marathon this November for PH Awareness Month! It’s based on the six-minute walk test, a common metric used to evaluate the well-being of PH patients. Get started planning your event and bring us one step closer to a cure!

Wednesday, September 12, 2012

Hit a Triple for Pulmonary Hypertension Awareness

Having your mayor or governor officially declare November Pulmonary Hypertension Awareness Month is a great way to combined PH advocacy and awareness raising. Plus, proclamation signings are a great reason to talk with the media about PH.

Follow these easy steps to spread PH awareness in your city, county and state! Secure a proclamation

Peek Family Wins Home Makeover Contest, Raises Awareness of PH

An upstate N.Y. family found that winning a home makeover contest provided them with a rare and exciting opportunity to personally draw national attention to pulmonary hypertension.

Read their story

Tuesday, September 11, 2012

Statement on Revatio for Pediatric Use from Scientific Leadership

PHA’s Scientific Leadership Council has just released a Consensus Statement on the FDA’s recent announcement regarding Revatio (sildenafil) for pediatric use.

Read the SLC statement

PHA Online University Gets Transformed!

This month, PHA launched a completely redesigned version of its website for medical professionals, PHA Online University

PHA Online University is PHA’s premier source of medical information for physicians, nurses, respiratory therapists and other medical professionals. With courses, journal articles, live webinars and other practice-related resources available for free, the site allows medical professionals to find the most up-to-date information about pulmonary hypertension.

With the redesign completed, PHA Online University’s new look allows users to easily access the numerous resources available on the site. The new site offers users a personalized web experience similar to Amazon.com, where resources are suggested to users based on items they have recently viewed.  Additionally, PHA Online University is now optimized for mobile technology so that busy medical professionals can access the site through their tablets, smart phones or other devices.

Beta testers at PHA’s International PH Conference and Scientific Sessions this past June helped provide feedback about the site during the design process. In the words of one tester, “This is a fabulous site! It will enable medical professionals to get up to date on ‘the latest’ in PH research and treatment.  I have never been on a website where I could move more freely and easily.”

If you are a medical professional, be sure to check out the newly redesigned PHA Online University at www.PHAOnlineUniv.org!

If you are a patient or caregiver, share this news with your medical team!

Monday, September 10, 2012

PH Fact of the Week: 240 Support Groups Nationwide

More and more, patients are taking part in our support group network. There are more than 240 PHA support groups across the country and at least one new group is added each month. You are not alone and there's a good chance there's a group meeting near you. Knowledge, support, hope and empowerment are just a few of the things a PHA support group can offer pulmonary hypertension patients. No one should face this disease alone.

Find a support group near you | Find an upcoming meeting near you

Friday, September 7, 2012

Pediatric Use of Revatio: Learn More About FDA Announcement

The FDA recently released a statement regarding the safety of Revatio® (sildenafil) for children ages 1-17. Dr. Dunbar Ivy of Children’s Hospital, Colorado will present on the FDA’s findings and the potential impacts on the pediatric pulmonary hypertension community.

Thursday, Sept. 20, 8 p.m. ET/5 p.m. PT

Register for the September Parents Telephone Support Group meeting

Special Events: Walking, Rolling, Painting and More!

Our volunteer special event organizers turned up the heat this month by hosting PHA Special Events in their communities! This month featured five inaugural events and one veteran event. Many thanks to our volunteers who continue to be creative in raising PH awareness, funds and fun!
  • Country Happenings PHun Walk - Brant, Mich.
  • CAPHS 6th Annual Walk and Roll - Akron, Ohio
  • Painting PHor a Cure - Altamonte Springs, Fla.
  • Bank of America Happy Hour for PHA - Roanoke, Va.
  • Messages of Hope - An Evening with Psychic Medium Josephine Ghiringhelli - Selden, N.Y.
  • Santa Barbara Fun Walk for a Cure - Santa Barbara, Calif.

To learn more about PHA Special Events, visit our web page or contact Events@PHAssociation.org.

Thursday, September 6, 2012

Accessible Travel Webinar Sept. 13

Disability101.com is holding a webinar with accessible travel expert Debra Kerper on Thursday, Sept. 13 from 7-8 p.m. CT. Webinar description from their website:

Have you ever wanted to travel but were afraid your disability would get in the way? Accessible travel expert Debra Kerper will show you the secrets to traveling with physical limitations. Our goal is to give you the information to make the right decisions about how and where to travel. Learn about navigating security and traveling by air, rail and sea. Find out why cruising is the number one vacation choice for travelers with special needs. Become aware of the importance of travel insurance….Don’t Leave Home Without It! Know what ancillary services are available to you to make your trip easier and stress free.

Register for the accessible travel webinar

Learn about traveling with pulmonary hypertension on PHA's website

Medical Professionals: 27 Education Events Across the Country

PHA is holding 26 medical education events across the country over the next three months through our Preceptorship and On-Demand programs. We are also holding an online webinar in October.

Check out the medical calendar on PHA Online University to find an event in your area or to register for the Oct. 25 webinar.

Golf Tournament to Benefit Pulmonary Hypertension Association

(Bangor Daily News) - Jeannette Morrill of Shirley is on a mission to raise funds for and awareness about pulmonary hypertension. She was diagnosed with the illness in 1976 when she was 23 years old. The outlook for recovery was not bright then, and she was told she might have two years left to live. She credits the development of a new medicine and the care of cardiologist Dr. Joe Wise with saving her life. Read article

Wednesday, September 5, 2012

PH Fact of the Week: Acute Vasodilator Challenge

Acute Vasodilator Challenge 
Definition: During a right heart catheterization, your doctor may choose to administer medications to test whether your pulmonary arteries can vasodilate (relax and decrease the pulmonary artery blood pressure). A vasodilator challenge is used to help determine which medications may work best to treat your pulmonary arterial hypertension. There are specific criteria used to determine if you are “vasoreactive.”

Learn more about the terms in this definition and other PH terms in PHA's Glossary of Pulmonary Hypertension Terms.

PH Awareness on the Radio in South Africa

The "Creating Awareness of PH in South Africa" Facebook page shared the following yesterday:

It is amazing how much reaction this (radio) Recording caused. I never knew that there is so few people that doesn't know what Pulmonary Hypertension is! Thanks for all the feedback, the advise and all the shares to create Awareness for PH South Africa!! PHenomenal Hope!!!!

Listen to the radio clip of Denneys Niemandt of PH South Africa on FM Mix 93.8

Tuesday, September 4, 2012

PHA Message on FDA Decision Regarding Sildenafil (Revatio) for Pediatric Usage

The U.S. Food and Drug Administration (FDA) has issued a decision regarding sildenafil (Revatio) for pediatric usage. More information can be found in FDA’s Medwatch and Pfizer’s statements.

The FDA advises that patients and caregivers should NOT change the Revatio dose or stop taking Revatio without talking to a healthcare professional.

In addition, PHA’s Scientific Leadership Council will be releasing a statement in the near future. PHA is exploring the ramifications of this FDA ruling and the best way to support the pediatric PH community.

Special Events: "Zebra-fied!"

PHA Special Events across the country are adopting our new early diagnosis campaign, Sometimes it’s PH, and its symbol, the zebra, in unique ways to increase public awareness of pulmonary hypertension.

Read about some of the ways events are getting "zebra-fied"