Tuesday, April 30, 2013

As a PH patient, how can I safely treat my allergy symptoms?

Allergy season is upon us! Unfortunately, having a diagnosis of pulmonary hypertension doesn’t protect you from more run-of-the-mill ailments like seasonal allergies.
Though PH is generally a rare disease, seasonal allergies (or allergic rhinitis) are thought to affect up to 30 percent of all adults. Typical symptoms of allergic rhinitis include nasal congestion, facial pressure, post-nasal drip, itchy and/or watery eyes, swelling around the eyes and sneezing. For some people, seasonal allergies only become troublesome at certain times of the year depending on the environmental allergen that triggers the symptoms (e.g., pollen in the spring). However, a large percentage of patients with allergic rhinitis have some symptoms throughout the entire year. In these cases, an indoor allergen may be responsible. In addition, patients with allergic rhinitis often have a predisposition to other related conditions, such as asthma and/or sinusitis.
As with any medical problem, establishing the correct diagnosis is key to determining proper treatment. It is important to remember that certain medications used to treat PH are associated with nasal congestion as a side effect. These include the endothelin receptor antagonists (bosentan and ambrisentan) as well as phosphodiesterase-5 inhibitors (sildenafil and tadalafil). If nasal congestion occurs after starting a new PH medicine, for example, and there are no other symptoms to suggest allergy (such as itchy eyes or a clear trigger), then it may be that your new PH medicine is responsible for the symptoms. If you suspect this, don’t stop the medicine — rather, consult with your PH doctor first. As mentioned above, having allergic rhinitis may predispose to bouts of sinusitis, an infection of the sinus cavities within the head. Bacterial sinus infections may cause fevers, intense facial pressure, yellow or green drainage from one side of the nose, or upper tooth pain. If you notice these sorts of symptoms, you should call your physician immediately as other treatments may be required.

Join us "on the road" in 2013!

PHA's FREE full-day regional education forum, PHA on the Road: PH Patients and Families Education Forum, will be visiting new cities across the country in 2013. PHA on the Road delivers much needed PH education and support to patients and families in areas close to home. The forums feature interactive presentations, education sessions and networking opportunities with other patients, caregivers and medical professionals.

The 2013 PHA on the Road forums will be visiting:
  • Denver, Colo.    
  • Boston, Mass.
  • Durham, N.C.
  • San Francisco, Calif.
  • Parent Sessions

    In 2013, PHA on the Road forums will feature parent support group sessions as well as a sessions led by expert speakers discussing issues of relevance to parents of children with pulmonary hypertension.

    Patient ServicesAttendees from PHA on the Road

    Attending a PHA on the Road forum is an exciting educational opportunity not to be missed. PHA provides a number of patient services during the event to help you manage your disease while you are away from home. Please consult with your physician about your travel plans.
    PHA’s Tips for Traveling with PH

    Information for Patients Attending PHA on the Road:

  • Please follow the motto, “Always be over prepared.”
  • You are responsible for bringing all medications and supplies (including oxygen) you will need during the forum. Oxygen may be stored safely at the “Patient Rest Stop.”
  • PHA will not be able to offer refrigerators for holding medication at the forum. If you require a refrigerator for medication and you are staying overnight at the hotel, you may request a refrigerator for your room.
  • Ice packs will be available throughout the day at the “Patient Rest Stop” at the forum for your use.
  • A final PHA on the Road patient information sheet will be mailed to all attendees prior to the forum.

Monday, April 29, 2013

Upcoming Webinars for medical professionals

PH in Schistosomiasis: An Overview

PH in Schistosomiasis: An OverviewGhazwan Butrous, MDMay 1, 1 p.m. ET/10 a.m. PTSchistosomiasis affects 200-300 million people worldwide, but an additional burden is placed on healthcare systems in the developing world due to complications of this disease which affect the pulmonary vascular system. Evidence shows that an estimated 2-10% of patients with schistosomiasis may suffer from pulmonary hypertension.  What can be done to raise awareness about this disease worldwide?Join international expert, Dr. Ghazwan Butrous, from the Pulmonary Vascular Research Institute, for this live webinar. This webinar will be accredited for up to 1.0 AMA PRA Category 1 CreditsTM

Dana McGlothlin, MD
May 8, 3 p.m. ET/12 p.m. PT
Left heart failure is the most common cause of pulmonary hypertension (PH) and is associated with increased disability and mortality, yet it can be challenging to recognize and distinguish it from other causes of PH. It is important to be able to distinguish PH due to left heart disease from other types of PH because the prognosis and treatment are different, and in particular, the use of selective pulmonary vasodilator therapies used to treat pulmonary arterial hypertension lead to adverse outcomes in patients with left heart disease.
Join PH expert, Dana McGlothlin, MD, a Cardiologist with Kaiser Permanente, for this live webinar which will be accredited for up to 1.0 AMA PRA Category 1 CreditsTM

Ronan Desmond, MD
June 5, 2013 at 3 p.m. ET/12 p.m. PT 
Pulmonary Arterial Hypertension have been shown to have similar characteristics with myeloproliferative disorders that are normally treated with hydroxyurea.  Hydoxyurea works in these patients to decrease CD34+ hematopoietic progenitors and decrease cell counts. NHLBI researcher Ronan Desmond, MD will discuss his group's hypothesis that hydroxyurea will improve hemodynamic parameters in this difficult to treat group of patients. The group's study will be looking at the effects in NOC/SCID mice in which the disease phenotype has been replicated.

Hyung Chun, MD
June 11, 2013 at 1 p.m. ET/11 a.m. PT
In pulmonary arterial hypertension (PAH) there is a dysregulation of microRNA-based endothelial signaling mechanism.  In this research update, Dr. Hyung Chun, a researcher from Yale University, will discuss his group's recent research into the role of some of the novel mechanisms that cause disease in PAH as well as the possibilities they may hold for future therapeutic targets.

PHA invites you to The American Thoracic Society’s 7th Annual (Free) Patient Forum on May 18

This free event provides pulmonary hypertension education, networking and lunch with PHriends and PH experts! Registration closes on May 3, 2013.

The American Thoracic Society (ATS), an international scientific society focusing on respiratory and critical care medicine, is providing a unique opportunity to PH patients.

Join us Saturday, May 18, 2013 at the Loews Philadelphia Hotel to learn about the latest in research, clinical trials and clinical care from pulmonary hypertension experts. During this interactive meeting, medical leaders, including a pediatric PH specialist, will answer your questions and share their insights in the PH field. The event is held in conjunction with the ATS International Conference. Visit www.PHAssociation.org/ATSPAR_2013 to learn more and to RSVP.

Sunday, April 28, 2013

Lend a Hand for World PH Day with PHA Canada

This May 5 PHA Canada is asking all Canadians to "Lend a Hand for World PH Day." Members of the PH Community are asked to organize awareness tables in their local communities and inform passers-by about PH by encouraging them to sign a blue hand as a show of solidarity with the global PH community. "Lend a Hand for World PH Day" kits are available through PHA Canada (order at lendahand@phacanada.ca) and include all of the information, hands for signing and give-away goodies needed to collect 50 handprints. Handprints will also be collected online through PHA Canada's Facebook page and website. To learn more or to order a Lend a Hand for World PH Day kit, please visit www.PHACanada.ca or email lendahand@phacanada.ca.

Question of the Weeek

With World PH Day coming up, we wanted to ask... Where in the world do you live?

Maintaining Relationships with Friends and Family After Diagnosis

Relationships are an important part of life for everyone, especially PH patients. A diagnosis of PH does not mean that relationships have to end, but in most cases, your relationships will change during your PH journey. During this webinar, learn how you can maintain healthy and fulfilling relationships with your friends, spouse or partner and other family members post-diagnosis.

Saturday, April 27, 2013

Get Breathless for PH

The theme for PHA Europe's 2013 World PH Day campaign is "Get Breathless for PH." Harnessing the universal intercultural appeal of sport, people around the globe passionate about helping those living with PH will be encouraged to take part in sporting activities to "get breathless." This imitates the experience of being breathless felt by many PH patients during everyday activities such as walking to the car or climbing the stairs. This powerful way of highlighting the restrictions on physical activity faced by PH patients will help to raise wider awareness of PH and bring to the forefront the challenges these patients face.
What can you do to "Get Breathless for PH" and raise awareness of this devastating condition?
  • Stay in contact with your local PH patient group who may hold sporting events
  • Encourage your friends and family to get involved in World PH Day events
  • Take pictures of yourself, friends and family taking part in sporting events, wearing the "Get Breathless for PH" T-shirts
  • Use #WorldPHDay when posting pictures or talking about World PH Day on social media to raise awareness
  • The World PH Day flyer and logo are downloadable here: Get Breathless logo, World PH Day logo, World PH Day flyer
Activities will be held not only on World PH Day but all year round.
Patient associations from the following European countries are planning "Get Breathless for PH" events: Austria, Belgium, Bulgaria, Czech Republic, France, Greece, Hungary, Italy, Ireland, Latvia, Norway, Poland, Portugal, Slovakia, Slovenia, Spain and Switzerland.
The campaign is open to any other associations; please contact p.ferrari@phaeurope.org.
Use this interactive WPHD toolkit to create a "Get Breathless" event of your own!
Watch this space for more information coming soon!
"Celebrity PH Physician Football Match"
The "Get Breathless for PH" campaign officially kicks off in Nice!
WPHS 2013 football
Among the players: the two Co-Chairmen of the World Symposium Nazzareno Galie, Italy (4th from right front row) and Gerald Simonneau, France (3rd from right front row); Simon Gibbs, UK (1st from left back row); Andrew Peacock, UK (2nd from right front row); Sean Gaine, Ireland (first from left front row), Ardeshir Ghofrani, Germany (4th from left front row); Werner Seeger, Germany (middle of front row) and many more including Jean Luc Vachiéry, Belgium and Rogerio Souza, Brazil.
The world's leading PH medical opinion leaders met recently in Nice, France February 27-March 1 for the 5th World PH Symposium (WSPH), the most important scientific event in the field of PH in the world. Each new edition of the WSPH has been bigger than the previous one, testifying the growing interest of the stakeholders in this medical condition. There were over 1.200 persons registered for the symposium this year.
On the evening of February 28, almost 40 doctors attending the WSPH were involved in the traditional football match "Latin-Mediterranean countries" against "Rest of the World." Before the match they all kindly accepted to endorse and help launch our campaign by wearing the "Get Breathless for PH" T-shirts for an official group photo!

Medical Organizers? Medical Binders? Empowered Patient Online Toolkit

There is no one-fits-all approach to organizing, as long as you feel like your system is working effectively for you, that is what matters. Medical files can be filed traditionally, filed electronically or in binders, whatever!
The Empowered Patient Online Toolkit was designed by experienced PH patients and healthcare professionals to help you create your own PH-specific medical binder. Download the resources, personalize them, and then either save them to an electronic flash drive or print them out and store them in a three-ring binder with tabs. Bring your binder with you to all appointments and any time you are admitted to the hospital.

Friday, April 26, 2013

Call for Abstracts for Special Supplement to the Journal of General Internal Medicine Topic: Research Methods for Evaluating Patient Health Outcomes in Rare Diseases

"The Agency for Healthcare Research and Quality (AHRQ), through its Effective Health Care Program, will sponsor a special journal supplement on research methods for evaluating health outcomes in rare diseases. This announcement invites authors to submit abstracts for manuscripts that describe original research or systematic reviews on methodologies for studying patient-centered health outcomes. Submissions must be original and show how the approach applies to one or more problems in the design, analysis, or conduct of rare diseases research. However, manuscripts may derive from studies examining either rare or common diseases. Authors with abstracts that are highly rated by an expert panel will be invited to submit a manuscript for peer-review and potential publication in a 2014 supplement to the Journal of General Internal Medicine (JGIM). JGIM is a leading peer-reviewed and widely indexed journal with an international audience among practicing clinicians and general medical researchers. Previous AHRQ-sponsored journal supplements on comparative effectiveness and patient-centered outcomes research (see examples from 2007, 2010, and 2012) have garnered high-impact contributions from internationally recognized experts"


Key dates:

  • Abstract submission forms are due by May 31, 2013.
  • Abstract authors who are selected to write a full manuscript will be notified by June 26, 2013.
  • Complete manuscripts from authors of selected abstracts are due by November 22, 2013.

For questions, please contact:

 from http://effectivehealthcare.ahrq.gov/index.cfm/call-for-abstracts-rare-diseases/

World PH Day Events Near You

The recognition and declaration of a World Pulmonary Hypertension Day is a step forward in the consolidation of a worldwide PH awareness. World PH Day will focus on the importance of improving the quality of life and life expectancy of more than 25 million people living with PH worldwide. Pulmonary hypertension can be a fatal disease that is difficult to diagnose. There are many types of PH, including idiopathic and hereditary PH, which are considered rare diseases. However, PH is most commonly the result of other health problems.
Regardless of type, pulmonary hypertension is defined as an increase in blood pressure in the pulmonary artery, pulmonary veins or pulmonary capillaries, together known as the lung vasculature. It is a severe disease with a markedly decreased exercise tolerance; pulmonary hypertension can also eventually lead to heart failure.

Raise Awareness- Participate or Host an Event!


During the celebration of World PH Day the patients' organizations will launch messages on the need to:
  • Increase awareness and disseminate knowledge of the disease to facilitate early diagnosis. Early diagnosis is important in decreasing premature PH-related deaths.
  • Promote access to specific healthcare and treatments that increase quality of life and life expectancy.
  • Promote the concept of treating PH patients as a whole, which includes treating their physical, psychological and social issues.
  • Unify international criteria for the recognition of Centers of Excellence in PH.
  • Promote research that will help find the cure for pulmonary hypertension.


In 2012, a program and a scientific symposium were held in Madrid, Spain as the first World PH Day celebration. The day was officially endorsed by 22 patient associations, 10 rare and affiliated disease organizations, and 8 scientific societies.
May 5 was originally chosen as World PH Day because it is the anniversary of the first child's death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago. This year, the May 5 date was upheld as World PH Day by popular consensus, and events are planned worldwide.
Source: "Primer día mundial de la hipertensión pulmonar," Asociación Nacional de Hipertensión Pulmonar, diamundial.hipertensionpulmonar.es


PHA staff recently exhibited at the Virginia Association of Cardiovascular and Pulmonary Rehabilitation Annual Meeting in Richmond, Va. Gerilynn Connors, BS, RRT, MAACVPR, FAARC, and Daniel Grinnan, MD, members of PHA's medical networks, were also in attendance.  Together, they educated participants about PH and discussed the important role of PHA in the medical community.