PHA Canada eNewsletter: Vol 5 #1 Jan 2014

Early diagnosis: our focus

Our community suggested the words ‘PHind out sooner: early diagnosis for a brighter future’ to define our goals for the 2014 year. We’ve taken these words to heart, as we truly believe that early diagnosis will make a world of difference for the patients in our community: for some, it could mean the difference between life and death. In order to illustrate the need for medical professional awareness to promote early diagnosis, we’re asking our community to share their stories. 

Please create a sign with your name, years until diagnosis and any misdiagnoses, and take a photo with it. Then, send us your photo at We’re going to collect the images in the months before November, and then share them in an incredible Awareness Month. We can’t wait to see your photos!

News and events

Our website calendar has a new format
The PHA Canada events calendar now has a new format. Instead of displaying a monthly calendar, events will now appear in a list. This format ensures that all upcoming events are visible! Please help us to populate our PH events calendar by sending in your news and events. If you’re holding a fundraiser or awareness activity, we’d love to share it with our community. You may enter your events on our website, or email them to

Inside PHA Canada

PHA Canada is growing: introducing Tarya!
Tarya Laviolette is a Master’s of Public Health holder, a PH patient, and most recently, PHA Canada’s newest staff member. Tarya has worked in a variety of mental health research settings, most recently engaging in policy analysis and organizational evaluation for the Centre for the Study of Gender, Social Inequities and Mental Health in Vancouver and teaching a 3rdyear course in the Faculty of Health Sciences at SFU. Just as she was launching her career in public health, she was diagnosed with idiopathic pulmonary arterial hypertension.
Since her diagnosis, Tarya has been driven to put her skills to use in the PH community.  We’re honoured to have Tarya as the Community Relations and Volunteer Coordinator for PHA Canada. Welcome, Tarya!

While we are thrilled to welcome Tarya, we wish to also recognize the incredible work of Regional Coordinator Jennifer Gendron. Jennifer has been involved with PHA Canada since its inception, but has stepped down from her position on staff. We are grateful for Jennifer's every contribution over the years. Jennifer will remain involved with PHA Canada as a founding member of the Board of Directors.

New year, new goals!
PHA Canada has big plans for the 2014 year. Our campaigns for World PH Day, Awareness Month and Early Diagnosis all call for member support. If you have ever considered volunteering for PHA Canada, now is the time: we need your help more than ever! To be a part of PHA Canada’s projects in the coming months, please contact Angie at to learn how you can contribute.

Resource tip: surviving the colder weather
Nurse Carolyn Pugliese has generously shared some of her expertise on how PH patients can handle the colder temperatures of the winter months. Below are her wise words on beating the cold.
Stay healthy:

  • Wash your hands often and sanitize between washes.
  • If you do smoke, please quit.
  • Care for your teeth and gums.
  • Avoid germs whenever possible. Be careful about exposure to others who may be sick. If it’s unavoidable that you will be exposed to germs, wear a mask, and wash your hands with an anti-bacterial soap and or hand sanitizer immediately and often.
Be ready for the cold:
  • Get a flu shot.
  • Buy extra groceries in case snow or cold suddenly keeps you indoors.
  • Make sure your windows and doors are properly sealed to eliminate drafts.
  • Make sure your furnace filters are clean so that the air in your house is not complicating your breathing.
If you do decide to go outside:
  • Wear several layers of loose fitting garments so as not to constrict your breathing, but allow you protection against the cold.
  • Keep your oxygen tubing (if you use it) inside your clothing to keep the air warm.
  • Minimize the cold that you feel. Bundle up and cover up as much as possible to limit exposure.
  • Limit your time outside so that the cold doesn’t have a chance to affect you in a negative way.
  • Breathe through your nose—it will help warm the air.
  • On very cold days, wrap a scarf around your face: it will help warm the cold air before it reaches your nose.
  • When you first step outside, stop and breathe a few short breaths before proceeding—this may save you a few coughing spells.
  • Park close or get dropped off - don't walk farther than you are able, especially in the cold air.

 Always remember - Call your doctor after hours or on weekends to seek medical attention at the first sign of symptoms of infection such as increased shortness of breath, fatigue, wheezing or coughing, fever or chills.

Low Sodium Recipe: Lemon & Rosemary Chicken with Quinoa
This hearty low sodium recipe is perfect for January weather. A big thanks to Rita for submitting this dish, originally sourced from Cook with Campbell’s.


1 lb (454 g) boneless, skinless chicken thighs, cut into chunks
1 tsp (5 mL) paprika
1 tsp (5 mL) ground black pepper
2 cups (500 mL) shredded carrot
2 cups (500 mL) shredded zucchini
1 cup (250 mL) diced portobello mushrooms
1 cup (250 mL) sliced button mushrooms
2 cups (500 mL) No Salt Added Chicken Broth
1 lemon, juice and zest
1 tbsp (15 mL) chopped fresh rosemary leaves
1½ cups (375 mL) quinoa

1. Heat large non-stick skillet at medium-high heat. Add chicken and sprinkle with paprika and pepper. Brown well on all sides. Remove chicken and set aside.
2. Add carrot, zucchini, and all mushrooms. Cook and stir until tender – about 3 minutes. Return chicken to skillet.
3. Stir in broth, lemon juice, zest and rosemary. Heat to a boil. Stir in quinoa. Reduce heat to low.
4. Cover and simmer until quinoa has absorbed almost all liquid and chicken is cooked through - about 20 minutes, stirring occasionally.

PH News 

New mitochondrial research offers hope to those suffering serious disease
(Medical Xpress)—Queen's University professor Stephen Archer's (Department of Medicine) research has revealed that in serious hu…
To many, PH patients don't 'look' sick, but they are
You wouldn't guess that some pulmonary hypertension (PH) patients suffer from a life-threatening disease just by looking at them…
Actelion receives Health Canada approval of Opsumit (macitentan)
(Thomson Reuters ONE via COMTEX) -- Actelion Pharmaceuticals Ltd / Actelion receives Health Canada approval of Opsumit (macitent…
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The Pulse

Share your story 
We love your stories and events! PHA Canada exists for our members: our goal is to share resources and connect our community. Submit your stories for Connections & the Pulse at:
Community Events: click to read more!
Jan 30 Lyengar Yoga for living with PH
Parkdale, All Day
12-Week Session January 30th, 2014 Thursdays 3:30-5:30 p.m. Classes will include: Breathing techniques to promote relaxation and restorative yoga postures to support organ function and restore energy balance.

Jan 31 BC Pulmonary Hypertension Society Annual Symposium
All Day
The BC Pulmonary Hypertension Society Annual Symposium will be held January 31 - February 1, 2014 in Vancouver, BC at the Terminal City Club, 837 West Hastings Street. Please go to for the details.

Jun 02 International CTEPH Conference 2014
Institut Des Cordeliers - Paris, France
All Day
International CTEPH Conference 2014 Date: 2nd & 3rd June 2014.
Hosting a PH event that you’d like us to publicize? Submit your event for our events calendar and we'll include it in The Pulse!

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