Monday, December 31, 2012

Fact of the Week: Living with Pulmonary Hypertension

While it can be difficult to imagine in the days and months following diagnosis, many patients develop strategies to cope with the physical and emotional aspects of living with PH and lead happy, fulfilling lives. With a bit of patience, planning, and flexibility, many people affected by PH find ways to work, travel, exercise, and do the things they loved before they were diagnosed.

In the spirit of the new year and making resolutions to live happier and healthier lives, we're focusing on our Living with PH section that includes tips for diet and nutrition, exercise, medication management, day-to-day living and more.

Visit the Living with Pulmonary Hypertension section

PHA Office Closed Jan. 1

PHA's office will be closed for New Year's on Jan. 1.

Friday, December 28, 2012

Double Your Gift!

Did you know that right now, thanks to a matching gift challenge from Actelion, your donations will be doubled? Make a donation today – and don’t forget to tell all your friends that donations to PHA are worth twice as much during the matching gift challenge!

Donate now!

Wednesday, December 26, 2012

Faces of Pulmonary Hypertension: PH Specialist Roxana Sulica, MD

We regularly feature faces of pulmonary hypertension, but they are often the faces of PH patients. Today we'd like to draw light on a PH specialist working in the field.

Dr. Roxana Sulica received her medical degree from the Carol Davila University of Medicine and Pharmacy in Bucharest, Romania, and completed her fellowship in pulmonary critical care and a dedicated clinical and research fellowship in pulmonary hypertension at Mount Sinai School of Medicine in New York, New York.

Dr. Sulica has served on the editorial board of the journal Advances in Pulmonary Hypertension, as well as a reviewer for numerous scientific journals, including Chest, Critical Care Medicine, Respiratory Medicine and Mount Sinai Journal of Medicine. She currently serves as principal investigator in several international, multicenter trials examining novel treatments for PH.

Read PHA's interview of Dr. Roxana Sulica

Friday, December 21, 2012

Happy Holidays from the Pulmonary Hypertension Association

All of us at PHA wish you a happy and hopeful 2013. We thank you for all you do in the fight against pulmonary hypertension. You are our strength.

Thursday, December 20, 2012

Gwen Olitsky: Caregiver to PH & HHT Patient

Faces of Pulmonary Hypertension

"Being natural caregivers, we figured out what we could do locally so no one would ever have to go through this again."

Read Gwen's story

Wednesday, December 19, 2012

Upcoming Telephone Support Group Meetings

The Pulmonary Hypertension Association has monthly telephone support group meetings for patients, caregivers and parents of children with PH. Join us each month to connect with others in your situation.

Join us TODAY!
1:30 p.m. ET/10:30 a.m. PT
There’s still time to take some “you-time” in 2012.
Learn more and join us

Dec. 27, 8:00 p.m. ET/5:00 p.m. PT
“Meet and Greet!” Introduce yourself, learn more about resources for patients and talk to other patients about life with PH.

Jan. 17, 2013
8:30 pm ET/5:30 pm PT
Pediatric Webinar Series: Cardiac Catheterization in Pediatric PH Patients
Presenter: Russel Hirsch, MD
Right heart cardiac catheterization is considered the “gold standard” for pulmonary hypertension diagnosis. In this presentation, Dr. Hirsch will review the need for cardiac catheterization, describe the course of a standard procedure and the therapeutic drug testing that happens during the catheterization, and discuss the risks associated with cardiac catheterization for pediatric patients.
Register now

Tuesday, December 18, 2012

Fact of the Week: Pulmonary Hypertension & Depression

Studies show that the majority of people affected by pulmonary hypertension will suffer from periods of depression. Because of its high incidence in the PH community, it’s important for you and your family to become familiar with its warning signs.

Learn about what to look for and strategies for moving forward

Walks, Runs, Golf, Wine Tastings, Dinners, and Bunco!

2012 was another busy year for PHA Special Events. This year saw an increase in events with 66 total events held across 26 states – from walks, runs, golf outings and Bunco to wine tastings, dinners and even some music, art and clothing events too!

Check out our online slideshow of photos from our 2012 events.

Monday, December 17, 2012

Hermalinda Leads Her Family and Friends in Christmas Parade

Pulmonary Hypertension Awareness Story
Submitted by: Hermalinda Avila, patient

My name is Hermalinda Avila and I was diagnosed with pulmonary hypertension in 2011 by a cardiologist who told me there was "no hope." My family pleaded with him for a referral to a lung specialist but he refused. It was only after a sleep apnea physician suggested I see a PH specialist in Fresno, (Dr. Vijay Balasubramanian), that I finally found someone who offered me hope when I had all but given up.

Dr. Balasubramanian made it clear that it would be a 50/50 effort - he would do his part in treating me, but I had to do my part, too, if I expected him to help me. Just then I saw that little ray of hope. I began Remodulin therapy on Dec. 1, 2011, and of course the side effects and my recovery are another story in itself. It is now December 2012, a year and a half after the cardiologist said "take her home and make her comfortable because she only has months to live."

Well, on December 1, 2012, it was my proud honor to participate in the Lemoore, Calif., Christmas parade representing PAH awareness. My family and many of my friends proudly marched in the parade representing PAH awareness. The thing is, they didn’t carry a picture of me as a memorial - I led the march as a surviving PAH patient. I am the "Zebra."

I have great gratitude and respect for Dr. Bala for his honesty and empowering hope that he gave me that November afternoon when my outlook was hopeless. Due to the lack of education on this condition, many doctors lack empathy for their patients who want to grasp at the last bit of hope there is to survive. I am a PH patient and I’m still striving to survive and educate myself to be able to help others who may have given up. I will always have PAH, but now I have a fighting chance to live a longer and more productive life, and so do all PAH patients. The side effects of the treatments can be very harsh, but at the end there is that little ray of hope. We must not lose focus, because once the side effects ease off there’s only looking forward to tomorrow.

Friday, December 14, 2012

Proclamation Challenge Moves Beyond U.S. Borders

PHA Toronto recently reported that they secured 29 proclamations recognizing November as Pulmonary Hypertension Awareness Month in Ontario, Canada. Their success really shows how far the proclamation campaign has spread in the last couple of years.

Two years ago, Support Group Leader and 435 Campaigner Doug Taylor from South Carolina challenged PHers to beat his efforts to procure the most proclamations recognizing November as PH Awareness Month. That year, the PH community worked together to get 30 proclamations. Recently, when Doug heard about the widespread proclamation success this November he said, “Looks like South Carolina has finally lost our #1 status for the most proclamations. I've always said it was one record I wanted to lose and this was the year!”

Congratulations to PHA Toronto for their hard work in getting so many proclamations!

Awareness Month Has Ended, but Awareness Raising Shouldn't Says Patient

Community Awareness Story
Submitted by: Angela, patient, Roberts, Idaho

I have severe primary pulmonary arterial hypertension and a hole in my heart. I've only been diagnosed for a year now and just starting on my awareness. Blackfoot Morning News is doing a story on me and this disease to help get awareness in Idaho. They will air it Christmas morning.

This spring/summer I will work on doing fundraisers and stuff like that and looking forward in doing my part to get the word out. I don't have a news article or anything yet because they are still working on putting the story together. Even though Awareness Month is over it's never too late to keep the information going. Here's a picture of me in the hospital at the University of Utah in Salt Lake City. Thanks for listening and thanks for letting me share what I have.

Get involved in raising awareness through the media

Holiday Tips Galore

The holidays are a time for family, togetherness and celebration. Everything should go perfectly, right? We have tips and resources to help you make the holidays go more smoothly.

Keys to Healthy Food Shopping Live Webinar TODAY at Noon
with Misty Lewis CHHC, AADP, certified health coach

How to Stay Happy and Healthy During the Holidays
By Crystal Weber, RN, PH Nurse Clinician, Pulmonary Vascular Disease Center, Duke University, Durham, N.C.

Four Ways to Keep the Holidays Special Despite Pulmonary Hypertension
Tips from PHers

Traveling This Holiday Season? Bring Your PH Documentation 
Prepare your Empowered Patient Toolkit
other traveling with PH tips

Holiday Inspiration: Promote Early Diagnosis to Your Holiday Card List
if you haven't done your holiday cards yet, an idea for spreading awareness

& News Coverage!
Linda Gates of LaPlace doesn't let pulmonary hypertension stop her from decorating for Christmas

Thursday, December 13, 2012

Hablas Español? PHA Needs Translators!

We have a lot of materials we'd love to share with our Spanish-speaking communities, but we can't do it without you. If you are interested in doing some at-home volunteer work for PHA, message Julia Friederich  at It would be EXTREMELY appreciated. Vietnamese and Chinese translators are also needed!

Scleroderma Future Treatments Webinar Tomorrow

Our friends at The Scleroderma Research Foundation are hosting a webinar on Friday at 2 p.m. ET/11 a.m. PT -- New Directions for Scleroderma Treatments: Understanding the Basis for Current Clinical Trials.

Learn more and register

Wednesday, December 12, 2012

PHers Secured 80 Proclamations in November

In mid-November, we reported that PHers had secured close to 60 proclamations declaring November as Pulmonary Hypertension Awareness Month. You didn't stop there! Below is a list of the proclamations garnered in the latter half of the month bringing us to a grand total of 80 proclamations! Great work everyone!
  • Bullhead City, Ariz., Joy Gore
  • Gilbert, Ariz., Staci Burk
  • State of Arkansas, Deloris Taldo Peacy
  •  Tontitown, Ark., Deloris Taldo Peacy
  • Fort Pierce, Fla., Michelle Holden
  • West Hollywood, Fla., Michelle Holden
  • Alsip, Ill., Vicky Rantfl
  • Palos Heights, Ill., Vicky Rantfl
  • State of Nebraska, Carol Lindstrom
  • State of New Jersey, Melanie Kozak
  • Clifton, N.J., Melanie Kozak
  • Passaic County, N.J., Melanie Kozak
  • Pennsylvania State Representative Richard Stevenson, Merle Reeseman
  • Aiken, S.C., Doug Taylor 
  • Irmo, S.C., Doug Taylor 
  • Lexington, S.C., Doug Taylor
  • North Augusta, S.C., Doug Taylor
  • Saluda County, S.C., Doug Taylor
  • West Columbia, S.C., Doug Taylor
  • State of Tennessee, Barbara Thompson
  • Davidson County, Tenn., Evette Britton
  • Gallatin, Tenn., Evette Britton
  • Nashville, Tenn., Evette Britton
  • Sumner, Tenn., Evette Britton
  • Friendwood, Texas, Jennifer Cueva

Check out the Latest PHA News

Stay on top of the latest pulmonary hypertension research news, upcoming telephone support calls, educational webinars, stories from our PHriends and more! Subscribe to our biweekly e-newsletter, PHANews, and check out the most recent issue.

Read and subscribe to PHANews

Holiday Coping and New Years Resolutions for Caregivers and Parents

Caregivers and parents! Are you thinking about holiday coping and New Year resolutions? So are we! Mark your calendars for our upcoming Caregivers and Parents Telephone Support Group sessions.

Caregivers | Parents

Tuesday, December 11, 2012

Sometimes It's a Zebra!

Pulmonary Hypertension Awareness Month Story
Submitted by: Aimee, patient, Raleigh, N.C.

I changed my Facebook photo to this one of my daughter dressed up as a zebra and posted the "Sometimes it's PH" link with a short blurb about myself as my status at the beginning of the month. I had lots of friends comment and many more than I would have imagined post the link as their status for a day too. Not a lot, but it's still something! :)

Patient in Ohio Raised Awareness on CNN for Awareness Month

Pulmonary Hypertension Awareness Month Story
Submitted by: Kevin Mayhood-Paskawych, patient, Marietta, Ohio

I wrote several articles for CNN's iReport in an attempt to get my message out. Unfortunately the election and the strife in the Middle East took most of the headlines, but I know in my local area having the article up on CNN did help get the word out. Never underestimate any resource.

Read Kevin's CNN articles:

New Pulmonary Hypertension Pendant in PHA Store

Recently PHA added a "Win the PHight" Pulmonary Hypertension Pendant in the Related Products section of our store where we list PH-related products available from community members who donate a percentage of the profits to PHA.

Cathy’s Creations creates unique one of a kind jewelry and has created a pendant for pulmonary hypertension. Each pendant is individually hand stamped on a 1 1/8" stainless steel disk with a "Hope" ribbon charm and completed with a light purple Swarovski crystal. $5 from the sale of each pendant (100% of the profits) will be donated to the Dr. Robyn Barst Pediatric Research and Mentoring Fund for PH.

Order online | Learn about other related products

Monday, December 10, 2012

This November PHers Raised Awareness in an Effort to Lessen Misdiagnosis

“I found out about your support group over the radio. I’ve been having shortness of breath for over a year and a half. I’ve been to cardiologists, neurologists and pulmonologists and they have not found a problem. There was never a mention of the possibility of pulmonary hypertension. My quality of life is impaired and I am frustrated.”
--Radio show listener who contacted Ft. Worth Support Group Leader Diane Dauwalder after she spoke on air about PH and her upcoming special event.

This November, we asked you to spread the word that Sometimes it’s PH and PH community members responded in a huge way! In 30 short days, PHers were everywhere: in news headlines, community events, government offices and online! Here are just a few of the ways PHers raised awareness this November:


PHers secured a record busting77 proclamations declaring November PH Awareness Month. Some went one step further to use these proclamations to gain media coverage. Jen Cueva from Texas mentioned her proclamation from the Governor of Texas in a letter to the editor in the Galveston Daily News, and Kelley Skumautz in Minnesota wrote about a proclamation from the Governor of Minnesota in her neighborhood newsletter.

PHers came from as far away as Washington came to PHA’s Congressional Luncheon to ask their Representatives and Senators to support the Tom Lantos Pulmonary Hypertension Research and Education Act. Luncheon speakers included Dr. Gary Gibbons, the Director of the National Heart, Lung and Blood Institute at the National Institutes of Health.

Special Events! 
This November boasted more than a dozen special event fundraisers in support of PH research and PHA programs.  Events included five 6 Minute Marathons. The events are designed to give special event attendees an idea what it’s like to experience the 6 minute walk test PH patients regularly undergo as a part of their treatment.

PHers around the globe found creative ways to raise PH awareness online including sharing photos, changing their status messages and sharing their PH journeys.

Thanks to everyone who participated in Awareness Month this November! Read more success stories and check out photos from Awareness Month events

Listen to Radio Interview with Dr. Juan Alejos from UCLA

Listen to this great pulmonary hypertension interview with Dr. Juan Alejos from UCLA Mattel Children's Hospital from KKJZ Radio in Long Beach with Host Mike Johnson, posted with permission from his show Tuned In. In total the interview is 28 min, but it is split into two parts.

Part 1

Part 2

What Would You Like to Learn?

Question of the Week: What topics would you like to see us cover in upcoming PHA Classroom webinars?

Submit your ideas in the comments section below.

Fotolanthropy Story: Daniel, a Young PH Patient

Quoted from the article: "Meet Daniel Jackson, an amazing 2 1/2 year old boy. His story is so incredible and I feel extremely fortunate that I had the chance to meet such a faithful family.  They are a family who has so much love in their home and especially for their sweet happy little boy. This is the story of Daniel Jackson. A joyful 2 1/2 year old boy with a kind heart and a smile for everyone he meets.  I thought it was best to hear Daniel’s story from Jaci, his amazing mother…" Read article

Friday, December 7, 2012

Local Band Jazzes Up South Florida Fun Walk

Pulmonary Hypertension Awareness Month Story
Submitted by: patient, Janeris Studios, Miami, Fl.

We had a "Fun Walk" to raise money for PHA. An awesome high school jazz band (North Broward Prep) performed as we walked. Friends and family of PH patients came in support and we were able to raise a good amount of money for the association. I took lots of pictures and put them on Facebook.

View photos

Fresno Walk Brings In 77 Walkers and $2,600

Pulmonary Hypertension Awareness Month Story
Submitted by: Perry Mamigonian, patient, Fresno, Calif.

On Sunday, November 4, 2012, the Fresno, Calif., PH Support Group hosted our first-ever "Six Minute Marathon" at Oso de Oro Lake Park in Fresno. We anticipated about 30-40 people and ended up with 77 in attendance. The weather was beautiful, 77 degrees and clear skies. The park had two trails - one short walk for the disabled, and a longer 1/4 mile trail around the lake. Almost everyone chose to walk around the lake.

After the marathon we enjoyed a great BBQ and welcomed our guest speaker, Dr. Vijay Balasubramanian, Medical Director of the PH Program at USCF/Fresno. Our pledges raised over $2,600 and we look forward to making this an even bigger event next year.

What did you do for Awareness Month? Share your story

Colleen Brunetti Talks About the Importance of Volunteering

Colleen Brunetti, an active member of the pulmonary hypertension community and go-founder of PHA's Generation Hope group for patients in their 20s and 30s, recorded a video presentation about the importance of volunteering for the 2012 South Korean Pulmonary Hypertension Conference.

Watch Colleen's 4 min. video:

Thursday, December 6, 2012

Medical Professionals: New Resources on Pulmonary Vascular Disease and Right Ventricular Dysfunction Now Available

Sessions from the September 2012 Keystone Symposium, entitled “Pulmonary Vascular Disease and Right Ventricular Dysfunction: Current Concepts and Future Therapies,” are now available on PHA Online University. Organized by Drs. Georg Hansmann of Children's Hospital Boston and Harvard Medical School, Stephen L. Archer of the University of Chicago Medical Center and Margaret R. MacLean of the University of Glasgow, this conference gathered basic and clinical researchers working in the field of pulmonary vascular disease and right ventricular dysfunction. Available recordings cover topics such as cell phenotype and function in PAH, right ventricle and pulmonary circulation in PAH, right ventricle failure in PAH and more.

Watch now!

PH South Africa Celebrates Awareness Month by Connecting the World PH Community

Pulmonary Hypertension Awareness Month Story
Submitted by:  Pulmonary Hypertension South Africa, Cape Town, South Africa

We decided, because of low budgets to have one big Awareness Day on 3 November where we had 7 guest speakers and about 70 delegates, representing patients, caregivers, doctors, medical aids, Pfizer and members of the media!! This was held at Wanderers in Gauteng. Read news coverage | View photos from event

We also had two Facebook activities, Letters to God and PHSA NoPHember Awareness Month Photo Album of Groups Around the World.

You can visit PH South Africa on their website or on Facebook.

Steve Van Wormer's Path of Pediatric PH...Six Years Later

Today (Nov. 28) marks the six-year anniversary of my son Lucas’ pulmonary hypertension diagnosis. On Oct. 28, 2006, he was only four years old when he underwent an array of cardiac testing and my wife Marina and I first heard the words, “pulmonary hypertension.” 
As any PH parent, patient or caregiver can attest to, it’s a day one never forgets and a diagnosis that changes everything. Lucas did have about a year of declining health and energy, but in hindsight, we consider ourselves lucky and blessed that his diagnosis was made earlier than most in our community. What I remember most about that day, after shedding some tears of course, was making the decision to not curl up in a ball but to become a champion for our only child. 

Wednesday, December 5, 2012

TAKE ACTION: Fiscal Cliff Bad for Health

Unless Congress acts before January 1, the Public Health Service, which includes the National Institutes of Health and Food and Drug Administration, faces a $2.4 billion budget cut in 2013. Tell Congress to take a balanced approach to deficit reduction that protects public health, medical research and drug approval.

Take action!

Keys to Healthy Food Shopping Webinar on Dec. 14

Keys to Healthy Food Shopping
Friday, Dec. 14, 12:00 p.m. ET/9:00 a.m. PT
Register now

Presenter: Misty Lewis CHHC, AADP, Naturally Sweet Nutrition

Does shopping for healthy foods seem daunting to you? With the countless number of options available, how do you know what to buy? Misty Lewis, a certified health coach, will take you on a virtual grocery store tour and present tips on healthy food shopping. Everyone in our community – patients, caregivers, and medical professionals alike – can benefit from Misty’s advice and get a head-start on your New Year’s resolution to eat better in 2013!

Misty Lewis’ struggle with Cushing's Disease was the catalyst for her to become a health coach. Misty received her training from the Institute for Integrative Nutrition’s Health Coach Training Program and has studied with some of the world’s top health and wellness experts including Dr. Andrew Weil and Dr. Deepak Chopra. She is passionate about sharing her health and wellness knowledge with others and helping her clients live their healthiest, even with health challenges. She lives in Connecticut with her husband and son.

Faces of Pulmonary Hypertension: Brandi Stickney

"I had gone to see my primary care physician many times. He kept telling me it was asthma and gave me an inhaler. If that didn’t work, we’d do a chest x-ray. This went on for about five months until I’d had enough and quit going to the mall because I kept passing out."

Read Brandi's full story

Tuesday, December 4, 2012

Your Gift Will be Doubled!

Actelion is matching donations made by PHA supporters to PHA’s End of Year Appeal dollar for dollar, up to $25,000. If PHA programs and services have been helpful to you, now is perfect time to make a tax deductible gift – your generosity will be doubled! Thank you.

Learn more | Donate now

Pulmonary Hypertension Advocate Diane Ramirez Featured on Fox TV

Many people in the PH community have responded to their disease by making pulmonary hypertension their personal mission. Diane Ramirez, a PHA board member from Thomasville, N.C., is one of them. Diane (pictured on left) has been informally called North Carolina’s PH advocacy chair because of her tireless work throughout the state to help PH patients and families ask members of Congress to support PH-related legislation. She’s also actively sought opportunities to talk about PH in the media to help more people understand the disease.

The story of Diane's commitment was told on her local Fox TV station last night in a feature segment called “Inspired Living.” Watch the Fox TV segment

Learn more about how you can raise awareness through the media

Past Developments Continue to Advance Pulmonary Hypertension Research

Researchers are constantly building on work done by other scientists before them to better understand how pulmonary hypertension affects the body and what is the next possible target for therapy to halt or even cure the disease. Until 1996, there were no effective treatments for pulmonary hypertension, but over the past two decades, there has been an explosion of research and drug development that has made PH one of the few rare diseases to have more than one treatment.

PHA Online University’s new history section highlights some of the advances made by researchers that have helped to advance knowledge about the disease to where we are now with nine possible treatments. The research done by scientists like Drs. Alfred P. Fishman, Robert Grover and Robyn J. Barst are stepping stones for current and future researchers who may be able to discover a cure.

Dr. Robyn J. Barst is a pediatric cardiologist who has been involved in clinical drug development for over 30 years. Her commitment to providing children with PH the same access to approved medical treatment as adults led her to provide the original gift to establish the Robyn Barst Pediatric Research and Mentoring Fund for Pulmonary Hypertension. Learn how Dr. Barst became involved with PH and the contributions she has made to the field in her own words as well as from colleagues who have worked side by side this PH Trailblazer.

Monday, December 3, 2012

Advice for Newly Diagnosed Patients from the Community

"Don't panic! There is hope!"

Last week we asked the pulmonary hypertension community to share their advice for newly diagnosed patients. Here's what they had to share:

Learn as much as you can, but be careful what you read on the Internet. Pulmonary hypertension is a rare disease that many do not know about, including medical professionals. It is important to learn as much as possible about the disease so you can educate your family and friends and the non-PH specialist medical professionals treating you. However, there is a lot of outdated or incorrect information on the Internet. Don't let statistics scare you. Patients recommended reading the PHA website for information and connecting to support. Another good resource is

See a PH specialist and get to know your medical team. Patients pointed out that PH is complicated so you want to see a doctor who specializes in pulmonary hypertension, and you want to get to know him or her and the team treating you. Since each case is different you will want to develop a strong relationship.

There is life after diagnosis. The community resoundingly recommended not letting PH define you. You are not the condition. Know your limitations and listen to your body. It is okay to slow down, but be sure to get out and enjoy life as your new normal allows.

Find support within the PH community. Join a local support group, connect online and Join PHA. PHers talked about the support and PH friends, or "PHriends," they made after diagnosis.

There will be good days and there will be bad days. Allow yourself to cry and receive support for your grief. Then allow yourself to enjoy life. Keeping a positive attitude is good for your health.

Be your own advocate and find someone who can advocate when you aren't able. Because medical professionals often do not know much about pulmonary hypertension and each case is different, the community recommended being proactive and advocate for yourself. In cases when you aren't able, have someone who can advocate for you who knows about the disease and your particular case.

The following quote from a PHer summed up the advice given by the community best:
"Definitely learn all you can about it. Know that you can still have a good life, but be prepared for changes and a long journey. Take care of your body. Keep a positive attitude and reach out to other PHers. We all understand!"

What Did You Do For Awareness Month?

Now that Pulmonary Hypertension Awareness Month is over we'd like to hear what you did to spread PH awareness. Send us your stories, news articles in the media, proclamations, short anecdotes, photos, videos, etc. We would love to share these with the entire community so they can share in the excitement.

Share your stories & photos