Edition 12

"PHan Mail"
Pulmonary Hypertension Western Australia
Support & Information Team
Spring/Summer February 2014 - 4th-2nd Quarter - Edition 12
"It's Breath Taking"
Information provided by Nurse Consultant Sharon Lawrence
RPH Advanced Lung Disease & Pulmonary Hypertension/Transplant Clinic
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Inside this issue....
"THE HYPE"
from your editor
Melissa Dumitru
Cover Story............. ..................1
The Hype
Sponsors & Supporters .............2
Birthday Club
Notice Board
Donations
Fundraising
Meetings & Events Calendar......3
Recipe for Health...................4&5
International News.................6&7
Health Matters........................8&9
Education & Awareness ..........10
Special Projects..................11&12
Special Feature..........................13
Phocus.......................................14
Breath of Fresh Air...................15
Conversations in caregiving......16
Resources, Research & Reads
An Apple a Day
Laughter is the best medicine... 17
News from the Network............18
Community Classroom.............19
Useful Contacts
PHWA at your Fingertips
Support Groups in WA
Disclaimer.................................20
Hello everyone and welcome to 2014! Happy New Year to everyone and here's to
hoping it's a good one. Please accept my apologies for this very late edition,
which should have come to you in late 2013, but better late than never and you
will find it packed full of interesting and fun articles for your reading pleasure,
we hope you enjoy it.
Well what a great 2013 Christmas party we had. Again it was very well attended
with a wonderful catered hot traditional Christmas lunch, room raffles with
prizes galore and another magnificent Santa Stall packed to overflowing with
delicious baked goods and homemade crafts donated by members, sponsors &
the team. It was a fabulous day and we are so glad everyone enjoyed themselves.
Thank you to everyone who donated their time to help set up and run our special
day you are all wonderful.
2014 promises to be an exciting year for PHWA. Since our attendance at the
Connect Groups Expo in September of 2013 we have forged a valuable new
friendship and working relationship with this team. They have helped guide us
through the process of applying for much needed funds through grants and
could not have been more helpful to us in our administration of the team. We
look forward to continuing our work with them and extend our sincere thanks to
them for all they have done for us to date.
We also want to acknowledge our sister group the Pulmonary Hypertension
Association USA branch for their continued support of PHWA. They have
generously invited us to send a representative to this year's World PH Leaders
Conference and also extended a Grant of $2000.00 to help us achieve this goal.
We are looking forward to our chosen representative meeting their team and
learning all they have to offer on how to sustain and grow our association here
in WA.
2013 was a year full of challenges for many of us, some of us more than others.
The thing I noticed the most was that even as horrible as we often felt on arrival
at our support group meetings we soon cheered up in each other's company. It
has now been four years since we started this valuable group and it's been
fantastic to watch the friendships and bonds of our members grow with each
year.
Thank you to everyone who supports our group, the carers who are indispensible
and to the members who are all special and courageous, may your year ahead be
filled with happiness and the best of health possible.
Be kind to one another. Happy days and blessings the PHWA Team.
Quote
Be kinder than is necessary, because everyone you meet is
fighting some kind of battle.
Proud sponsors and supporters of PHWA
PHAssociation.org (USA
LIFE
Support Group
Lung
Information
& Friendship for
Everyone.
Scleroderma
WA Social
Group WASSP
LANDSDALE
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"ITS YOUR BIRTHDAY"
FEBRUARY
Wendy Lunt, Deidre Sabine, Donna Blaxill, Jennifer Bertinat, Linda Franklin
MARCH
Mimma Versace, Brian Anderson, Dawn Bartley, Jacqueline Rooney
APRIL
Christine Clarke, Viviane Boekelman, Jean Ottley, Dorothy Scott, Patricia Baker
NOTICE BOARD
DONATIONS: $100.00 Jenny Cooke, many thanks for her continued financial support. $12.30 was donated at
the November meeting in our PHWA donation box.
FUNDRAISING: Christmas Raffle & Santa Stall rose close to $2000.00. Our raffle winners were as follows:
1st Prize Ann Newton, 2nd Prize Debbie Duncan 3rd Prize Eleanor Clarke 4th Prize - Patricia Holden.
Winner of the Italian Christmas cake - Viviane Boekelman. Thank you to everyone who sold raffle tickets and
participated in all the fundraising and raffles for 2013.
THANK YOU'S & SHOUT OUT'S: Wyllie Arthritis Centre who generously donate their function room to us
for each meeting. This is invaluable to us and we are very grateful. PHWA Sponsor Gabrielle Worthington!
She is very generously sponsoring us for the supports group "PHan Mail" magazines to be printed. Tony Beard
Business Foundations who advises & guides us on our future planning. Connect groups who have offered so
much guidance and financial assistance to us this year and finally to our Volunteers who work tirelessly to
support our team and its members, we greatly appreciate your assistance and kindness.
SUPPORT GROUP MEETINGS - PHWA: Please advise if transport is needed we'll do our best.
Meeting Dates for 2014 - Tuesday's - 11.00am - 2.00pm, registration 10.45 - catered lunch $10.00pp (please
advise dietary needs and remember that if you book a lunch and cannot attend the support group still has to
pay for it). In 2014 we will continue our bi-monthly meetings this time they will be held on a TUESDAY date
cards have been mailed out, let Melissa know if you need another one. April 8th, June 17th, August, 19th,
October 21st, December 9th Christmas Party.
SEMINARS, EDUCATION SESSIONS & GUEST SPEAKERS FOR 2014: Simone McMahon Organ
Donation Transplant Foundation (April) Kim O'Meara from Laughter Yoga speaking about her Rwanda trip
(June) Professor Eli Gabbay, speaking about the new and exciting updates on PH (August). October's guest
speaker TBC.
GRANT APLICATION UPDATES: In September 2013 we applied for a Grant from the Connect Groups
"Pay it Forward" scheme and I am pleased to announce that we have been approved! The Grant will allow for a
much needed laptop, software & computer training to make the group fully portable and assist in all
administration needs YAH!
SPECIAL EVENTS FOR 2014: PHWA has been invited to send a representative to attend the World PH
Leaders Conference in June in Indianapolis USA by our sister association PHA USA. They have also
extended us a Grant of $2000.00 to help towards flight and hotel fees. We will also be applying for a further
grant from Connect groups as this is going to be an expensive exercise. This conference will be most valuable in
helping us to maintain the support we offer to PH patients and their families. Stay tuned for more updates!
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"Our Gluten Free Issue"
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The Carême range of traditional pastry is available nationally in fine food stores and independent
supermarkets. (In Perth they can be found readily at the Herdsman Growers Fresh and sometimes
Carine Fresh gourmet deli).
New to the Carême range is the Gluten Free Pastry in Sour Cream Shortcrust and Sweet Vanilla Bean
Shortcrust in 400g blocks. These gluten free pastry options don’t compromise the flavour, texture or
workability of the original Carême pastry.
Our Classic Range and the new Gluten Free Pastry is made using traditional methods from the finest
quality natural ingredients. Our products are genuinely handmade and are free from additives and
preservatives. We use only high quality unsalted butter and source our flour from Laucke Milling and
Four Leaf in South Australia. On the inside of every packet you will find instructions on how best to
prepare and bake the pastry.
"...if you want your tarts and pies to look like a chef's, pick up the Carême range..."Valli Little,
Food Director, Delicious Magazine
GLUTEN FREE Sweet Vanilla Bean & Sour Cream Savoury pastries can both be found
alongside their sister products, butter puff, sour cream, sweet vanilla and dark chocolate.
Sweet Vanilla Bean
Sour Cream
Gluten Free
Gluten Free
Butter Puff
Sour Cream
Vanilla Bean
Dark Chocolate
In the coming issues we will be introducing a new and interesting way to bring you recipes direct from our
members. After a great discussion at our first meeting for 2014 it was decided that members would look through
their own personal recipe books for those "golden oldies" that you cook year after year or the family favourite that
was hand written and covered in cooking flour handed down over the years. We will compile several recipes at
once and the chosen will cook their recipe for the group meetings for everyone to try and then they will be published
in the following edition of the magazine for everyone's eating enjoyment. The recipes can be sweet or savoury and
will be added to our normal morning tea and lunch table.
So, get your recipes into Melissa now!!!
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The daily challenges of living with pulmonary hypertension sometimes may feel as
draining to patients and their families as pedaling a bike from coast to coast without
stopping. In tribute to the perseverance of those touched by PH, six amateur cyclists,
including a PH physician, will compete in a grueling biking contest. Race Accross
America (RAAM), in June 2014 to benefit PHA.
Throughout this year leading up to the race, our PH community will support the team,
dubbed Team PHenomenal Hope, through an accompanying awareness and fundraising
campaign, Race of our Lives, with opportunities for events in communities nationwide.
Working together, the cycling team, PH families and PH professionals will highlight the physical and mental demands of PH
while raising money for research and a cure. The RAAM course, roughly 30 percent longer than the famous Tour de France,
crosses 12 states and ascends to more than 170,000 vertical feet of elevation. Unlike the Tour de France, this race continues round
the clock until competitors cross the finish line a maximum of nine days, about half the time of the French event.
RAAM is also known for its cycling teams supporting their favourite charities. For instance, PHA's logo and colors will be seen
on Team Phenomenal HOpe's cycling jerseys and support vehicles as the competitors generate news coverage along the course.
Article couresy of Pathlight PHA USA
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Article couresy of Pathlight PHA USA
.
Quote
Life isn't tied with a bow but it's still a gift.
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One of PHWA's amazing sponsors the Landsdale Guardian Pharmacy has some great news, they were recently
approved to become a "Compounding Pharmacy" for the Northern Suburbs. They have also extended their opening
hours for the convenience of their customers and are proficient in helping patients with chronic conditions manage
their medications. There is also a Doctors Surgery next door that has extended hours, 7 days a week.
Introducing the "Tradies Kitchen" featured at Landsdale Guardian Pharmacy.
The lovely Anne Marie from Landsdale Guardian Pharmacy who has previously been featured in our magazine for
designing and donating oxygen bottle covers that are to die for informed us that her cousin David and his good friend
Grant have recently invented the "Tradies Kitchen" an ingenious working case with all the tools for a great meal that
any Tradie would be happy to own and all for the bargain price of $79.95! I had a look at the case and I was mighty
impressed, I know they are going to sell like hotcakes. Google the guys and have a look at their road to a great lunch!
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Keep up with everything going on in the pulmonary hypertension community with news, stories, events, educational
information and ways to get involved.
Sunday, December 22, 2013
New Pulmonary Hypertension Drug Approved!
Friday, the U.S. Food and Drug Administration (FDA) approved United Therapeutics' oral treprostinil, an extended-release
tablet commercially known as Orenitram, for the treatment of pulmonary arterial hypertension (PAH). Orenitram is the first
orally administered prostacyclin analogue approved by the FDA for any disease.
"PHA is always pleased as new treatments become available. They increase options for patient treatment, both individually
and in combination with others," says PHA President Rino Aldrighetti. "This is the twelfth treatment for PAH, the third new
therapy to be FDA approved in the last two months. During the past 10 years, the average number of drugs approved per year
for all rare diseases is fewer than thirty. To have this kind of advancement for PAH is extraordinary and speaks to the medical
and research structure that has been built in this field."
Most Effective Use of Treatments Requires Early Diagnosis
While huge strides have been made in the advancement of therapeutic options, the time it takes to reach a correct PH
diagnosis has not changed over the last 20 years. Many patients will see three or more different physicians over a three year
period before they are properly diagnosed with PH, and almost three-fourths have advanced PH by the time they are
diagnosed.
“Misdiagnosis and delayed diagnosis have an impact on patient survival and quality of life,” explains PHA Senior Director of
Volunteer Services Debbie Castro. "Because PHA sees early diagnosis as a huge priority, we are working with medical
professionals and patients to improve diagnosis through our early diagnosis campaign, Sometimes it’s PH."
More Needs to be Done for Children
While there are 12 treatments for pulmonary arterial hypertension (PAH), none are specifically approved for paediatric patients.
PHA has launched the only paediatric PH research program in the United States, the Robyn Barst Paediatric Research and
Mentoring Fund.
And, says Rino, “Ultimately, our goal is a cure. With increasing numbers of researchers engaged in more studies every year,
we are hopeful and encouraged as we see that hope turning into action.”
Learn more: Read article | PH treatments in the U.S. | PH treatments worldwide | Sometimes it’s PH website | Robyn Barst
Pediatric Research and Mentoring Fund
Our Scientific Leadership Council is working on a forthcoming treatment fact sheet with more details. When completed the fact
sheet will be available here: www.PHAssociation.org/Treatments
Posted by Pulmonary Hypertension Association at 10:14 AM
Article courtesy of PHA USA
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INTRODUCING PHWA'S BOOKKEEPER
Welcoming Michele De Rosier PHWA's new bookkeeper. Michele has kindly offered to
bring our book work up to scratch for the mere fee of $250.00, donating the lion's share
of her time and expertise to our group to help get our books organised and up to date.
She has given up many a Sunday to achieve this goal and we are nearly there after
having a break while she endured a painful surgery on her back and a lengthy recovery.
We are so grateful to her for her generosity of spirit and welcome her to PHWA!
Michele is originally from the Channel Islands, where she worked in the corporate sector as a Chartered Accountant.
She did her further education with Moore Stephens Chartered Accountants and also worked as a Treasury
Accountant in local Government up until her move to Australia in 2008 after her beautiful mother passed away in
March 2008. She joined the First Class Accounts Bookkeeping franchise in July 2009 where she has been a slave to
her business ever since.
On a personal note, her family consists of Lucy and Misty her cats, Sapphina Sassy Pants (Sapphi) and Jojo her
pooches and Mickey and Victor her ponies. Mickey, being her baby arrived recently in Perth from Queensland. He
will reside in Busselton to be broken in till April and she can't wait to ride him.
When her back isn't playing up she enjoys sports in her spare time such as swimming, cycling and yoga and of course
horse riding and walking her beloved dogs, not much spare time for these activities with her business though!
Michele has just gone onto the Church roster for after service teas after finding a lovely traditional Church of England
church on her doorstep up at Quinn's Rocks where she attends the 7.30am service!!
She is looking forward to hopefully making the time to come and meet the members at one of our support group
meetings in the future.
A SMILE FOR TODAY.......
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The Connect Groups Expo was held at the Garden City Shopping Centre over 3 days in September 2013. In attendance were many
support groups from different medical backgrounds, one of which was PHWA. We were joined by our sister groups LIFE support
group and ODAT organ donation transplant foundation WA. Our stall volunteers who generously gave their time were the
gorgeous Brian Anderson, Linda Franklin & Melissa Dumitru. We were supported by Margaret Nunn who unfortunately couldn't
join us due to a virus but assisted greatly working from home with getting our flyers ready for print, the lovely Lesley Allnutt
popped in to say hi and Simone McMahon CEO of ODAT kindly bought us a big box of goodies to hand out such as stickers,
squeeze balls and drink bottles. Thank you so much to everyone for all their assistance and helping to spread the word through
information to the public on PHWA and pulmonary diseases in general.
Brian Anderson & Melissa Dumitru
man the PHWA stall on the first of
the three day expo.
Simone McMahon from ODAT with
Melissa from PHWA.
Lovely Linda from PHWA lends a
helping hand to LIFE.
PHWA Stall with the all the
information for the public and other
representatives.
Connect Groups did a fantastic job
with all the booths and layout for the
various support groups.
Brian Anderson chatting to a member
of the public and a member of the
LIFE support group stand.
Judy Kohl from Samaritans Hotline
with Melissa Dumitru from PHWA,
showing of our face painting fun!
The members from LIFE support
group smile for the camera! Was
great to be there altogether at this
event.
Coordinator Jenni (far right) with
members from LIFE at their stall in
front of PHWA.
Three members from LIFE show off their
fabulous T-Shirts.
LIFE member shares information
with a member of the public.
LIFE members at their stall before
the Expo began.
The Expo was very professionally set up and organised with members from the organisation on hand at any time to assist in any
queries or issues. They helped with introductions between support groups and professionals from Lotteries West and various
local businesses and councils. There was an amazing balloon man making shapes and animals for all the children along with a
professional face painter, not to mention the multitudes of wonderful shops that make up the centre. It was a fabulous and
accessible venue for everyone even if the public were a little shy at first.
We were joined by several dozen other Support Groups from many different backgrounds including Fibromyalgia, Samaritans
Crisis Line, Pflag parents and family of gays and lesbians, HUGS the hardship utility grants scheme, Seniors Housing Centre,
Dep't for Communities, Community Vision, NCWA neurological council WA, Parkinson's WA Inc. Motor Neurone Disease WA,
Peripheral Neuropathy WA, Chrone's Disease & Ulcerative Colitis, Stroke Foundation WA, Bipolar Disorder, Bereavement
Support, Genetic Support Council WA Inc, Lyme Disease, Grow mental health, Meningococcal disease to name a few. We made
a point of introducing PHWA to each and every one of the stall holder's representatives and networking to introduce them to
Pulmonary Hypertension, most of which had never heard of the disease. We have flyers and pamphlets on everyone we met if
anyone needs further information or referral to one of the groups in attendance. In general we met some amazing and
inspirational people who like us mostly volunteer their time and are passionate about their cause.
The networking that was achieved over this time period was invaluable and we made an amazing new work friend in the Connect
Groups team who have been working with us since on accessing grants and offering information and referral where needed. This
relationship is so welcome and appreciated. Thank you to the team who put on this amazing Expo and gave of their time so
generously to all of our Support Groups.
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PH
CUS
If anyone is interested on further information, or a DVD on a patients self management of your long term
condition, please don't hesitate to ask the Coordinator of Life Support Group Jenni Ibrahim or email
Melissa on [email protected] for referral.
ARE YOU PREPARED IF AN EMERGENCY ARISES?
Do you have a "Medic Alert" bracelet? We strongly urge all PH/PAH patients to have some form of medical I.D on them at
all times. If you do not have medic alert jewellery, speak with your PH Doctor about what should be inscribed on the
jewellery if an unforseen event occurs.
There are medic alert application forms available from GP or at
http://www.medicalert.com.au - If you are on IV medication (continuous infusion such as Flolan via a Hickman line) you
may want to consider carrying a letter with you from your PH Doctor that can be given to emergency services or the
hospital emergency triage nurse. If you have an iPhone/Smartphone you can put a free application called ICE (in case of
emergency) in your mobile phone, which stores all your important medical information. You may also like to keep a credit
card sized ICE I.D card in your purse or wallet.
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Tip for the day:
.
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Carer's WA is now on FACE BOOK!
If you have a story or statement you would like to include in the newsletter on a caregiver please contact the Editor directly to have it included in one of our future editions.
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NOVEL - "The Winning Spirit" Lessons Learned in Last Place, written by Zoe Koplowitz (with Mike Celizic).
A truly inspiring read you shouldn't miss out on, the relentless achievements of a chronically ill woman and her journey.
In a world that values fast, she is perpetually slow. In a world that demands first, she gives new meaning to the word
last. More than a decade ago, Zoe Koplowitz completed her first New York City Marathon. It started out as an attempt
to salvage her life from the ravages of Multiple Sclerosis. To date, she has completed thirteen Marathons, all in last
place, and has set world records in Boston, New York & London. The Winning Spirit - "Life Lessons Learned in Last
Place" recounts the true, inspiring & amazing adventures that Zoe has experienced along the way. It is a tapestry of
poignant, funny & authentic stories about ordinary people learning some of the most extraordinary lessons life has to
offer. The power of a dream. Courage in the face of adversity. The beauty of unconditional love. "The Winning
Spirit..." challenges the universally held belief that winning in the game of life is always about a first place finish,
which forever belongs to the swift and the strong. It provides a nonpareil opportunity for readers to reclaim their
personal power and to reinvent the words "win" and "achieve" in the context of their daily lives. With the wisdom and
humour of memorable stories, and characters that live on long after the final chapter, it teaches the ultimate lesson.
Sometimes last can be first.
Two men are walking through the bush when they spot a vicious wild pig.
The first man immediately gets his sneakers out of his backpack and starts putting
them on. The second man says, "You're crazy! You'll never be able to outrun that pig!
"I don't have to", the first replies. "I only have to outrun you."!!!
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Introducing El Caballo Lodge owned and run by PHWA members Ian & Joanna Lockyer.
As a special offer to all PH members and "PHan Mail" readers, Ian & Joanna have offered a $30.00 per room
discount when you stay at their relaxing lodge. They are surrounded by the soft gentle breezes of the tall gum
trees and offer a delicious complimentary continental breakfast to each guest. Joanna is a fantastic and
interesting host who will make you feel most welcome. Her lovely husband Ian who is a registered psychologist
also offers the added benefit of counselling & relaxation sessions (fee applies) to those who would like to spend
some time healing inwards as they enjoy this beautiful environment. We hope you consider a stay with the
Lockyers one day soon.
QUOTE
The nicest thing about the future is that it always starts tomorrow.
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Pulmonary Hypertension Western Australia
Support & Information Team
Home Base - 144 Hellfire Drive, DARCH WA 6065
Contact - Coordinator Melissa Dumitru
041 893 0291 - 9302 3078 - [email protected]
FACEBOOK COMING SOON!
"It's Breathtaking"
NAME OF GROUP
LIFE
Support Group
PHWA
Support & Information Team
WASSP - Support & Social Group
Altone Improvers
Bentley Bronchiatrix
Rockingham Respiratory Support
WA Transplant Support Group
The Beat
(Newsletter available also)
Esperance Easy Breathers
Northern Easy Breathers
South West Impaired Lungs
Support (SWILS)
ONLINE GROUPS INCLUDE
(Available through Yahoo Groups)
CONTACT PERSON - TELEPHONE & EMAIL
Jenni Ibrahim - Coordinator
9382 4678 - [email protected]
Melissa Dumitru - Coordinator
041 893 0291 - 9302 3078
[email protected]
Margaret Nunn - Convenor
9386 4096 - [email protected]
Bill - 9377 0778
Mike - 9359 2025
Jan - 9528 2965
Sharon Lawrence - RPH
[email protected]
TYPE OF GROUP
All Respiratory
Support Group & Pulmonary Rehabilitation
Contact Esperance District Hospital: 9071 0888
Support Group meets in Heathridge contact
1800 654 301
Support Group meets at Bunbury Library - contact
Geoff & ivy - 9729 2221
Lungaroos - Bronchiectasis
Alpha-1 Antitrypsin Deficientcy - Ozlung
Respiratory
NAME OF ORGANISATION
Carers WA
Arthritis Osteoporosis WA
Health Consumer Council
Lung Foundation Australia
Lupus WA
Silver Chain
ODAT (Organ Donation &
Transplant Foundation WA)
Palliative Care
PH/PAH
Respiratory
Orphan Diseases
Scleroderma
Respiratory
Respiratory
Respiratory
Transplant
Heart & Lungs
Respiratory
Respiratory
Search by name
CONTACT DETAILS
T: 1300 227 377 - www.carerswa.asn.au
T: 9388 2199 - Country: 1800 011 041 - www.arthritiswa.org.au
T: 9221 3422 - Freecall: 1800 620 780
E: [email protected] - W: www.hconc.org.au
T: Toll Free 1800 654 301 - www.lungfoundation.com.au
RPH - T/F: 9224 3144 - E: [email protected]
T: 9242 0242 - Country - 1300 650 803 - E: [email protected]
T: 9361 2225 - M: 0412 912 929
E: [email protected] - W: www.odatwa.org.au
T: 1300 551 704 - www.palliativecarewa.asn.au/
DISCLAIMER
The information contained in PHan Mail newsletter is provided in good faith and believed to be reliable and accurate at the time of publication. However, the information is provided on the basis that a reader will be
solely responsible for making their own assessment of the information and its accuracy and usefulness. PHWA will be in no way liable, in negligence whatsoever, for any loss sustained or incurred by anyone relying
on the information, even if such information is or turns out to be wrong, incomplete, out of date or misleading. Pulmonary Hypertension Western Australia does not recommend or endorse any products, drugs,
treatments, procedures, medical or health professionals in this newsletter. We suggest you discuss this information with your PH Doctor or General Practitioner. We act as an information and support team only.
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