The PH Ellie's range is available through to World PH Day - 5th May 2017. Adopt a PH ElePHant and become part of the PHamily! Includes Adoption Certificate Magnet.
See more at phwa.info home page or contact us through info on back page.
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Inside this issue....
Summer/Xmas 2016
Cover Story................................1 Merry Christmas from the team
The Hype....................................2 Editors update, Birthday Club Notice Board..............................3 Donations, Meetings, Fundraising, Events Calendar, Announcements, Sponsors & Supporters
Christmas Summer Recipe...........4 Gingerbread Crinkle Cookies
News from the Network..............5 PHWA Public Service Announcements
In the Spotlight........................6/7 Connect Groups Association
In the Spotlight.....................8/9/10 PHWA a year in pictures - PH Patient Pack Launch, Adopt a PH elePHant, PH Global November Awareness Expo, Lions Club Champagne Breakfast, annual Xmas luncheon
Good Health...................11/12/13 Self Care - Tips for living well with PH By PH blogger Serena Lawrence
PH Postcard..............................14 Global PH Awareness Month - news from our PH global sister groups
PH Guest Speaker......................15 PHWA Patron Professor Gabbay launches the Adopt a PH elePHant project for 2106.
PH Feature......................16/17/18 PHocus on Allergy & Hay Fever Season
Community Spotlight.................19 Memorials & Farewell's
PHWA at your fingertips............20 Contact Details for Home Base, WA Support Groups, Useful Contacts, PHWA Disclaimer
Hello PH family and welcome to the Summer Christmas edition of PHan Mail magazine 2016.
I've now had the pleasure of being the editor of our PHan Mail magazine for four years of the six we have been operational. On our 6th Christmas edition as we celebrate our birthday and enter our seventh year I have been reflecting on all we have achieved and our PH PHamily as a whole. We have grown, we have seen loved members pass away, members return to work, others who are to unwell to attend our gatherings but are in contact with me, a communication which I cherish and enjoy especially hearing how grateful they are for the magazine and how much better they feel being included, along with gorgeous new members join us from WA and nationally.
It feels like it wasn't that long ago that we were getting ready for the 2015 festive issue! They do say "time flies when you're having fun"! Looking back on the past 12 months does always help to put into perspective why we might feel in need of a holiday or some time out. In particular for PHWA it has been an incredibly fast paced year that has seen the release of the first ever Australian PH patient pack resources, the launch of the invisible diseases campaign and our November awareness fundraiser "Don't ignore the elePHant in the room, pulmonary hypertension"! We completed two major education grants and were given funding to advertise our organisation and its resources in some of the major publications for WA and Australia which will be rolled out in the coming year. We are also pleased to announce that as of 2017 PHWA will become a National organisation and be known as PHNA, Pulmonary Hypertension Network Australia. We will keep you informed of this new adventure as it unfolds.
This issue is a combination of pictures and with memories for everyone to share, along with some great articles, we hope you enjoy it.
I would like to wish everyone a very Merry Christmas and a Happy New Year from the entire PHWA team. We have worked very hard this last year for our organisation and its membership to try to make life a little better with PH. We hope to see you again in 2017, and want to thank you all for your contribution, attendance and friendship over the past year. Be kind to one another your editor and the team, Melissa, Helen, Sharon- Louise, Denise, Marie, Clare, Allan, Val, Lorraine, Annie, Mim, Margaret and the incredible volunteers.
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The Hype
Proud Sponsors & Supporters of PHWA
Donations & Fundraising - $100.00 Retravision Cannington organised by Fundraising
Coordinator Val Avins. Raffle Meeting October 25th $115.00. Baby elePHants as at 25th October $154.00, donation box $11.20. Some out of pocket expenses for cafe catering meetings. Donation courtesy Events Coordinator Sharon Louise Massie UK relatives, Gwen & Peter Newman $100.00.
November awareness month fundraising Expo $2757.00 (minus floats/expenses). Lions Club
Champagne Breakfast raised $1000.00 with an extra donation from the club of $500.00. Knitted elephant's, gingerbread houses & Christmas cakes, shortbread project at expo $580.00. Xmas
Party annual luncheon tombola $107.00, Christmas cake raffle (cake donated by Coordinator Sharon Louise Massie) $181.00, bake sale & elephants $ 190.00 (catering & expenses). Member donation Allan Mitchell $50.00.
Thank you to all the members, donors and sponsors for your generosity and helping us bring together some amazing prizes for all our events. Weigh n Pay, Lions Club Whitfords Australia,
Woodvale Boulevard Shopping Centre, without the valuable support of our community we could not promote PH, raise awareness or create resources to help those living with pulmonary hypertension. The funds and grants we receive and raise go towards ensuring the continuation of our organisation and its goals to help people living with PH to have better lives, more support and great resources. We humbly thank you for entrusting us with these funds and the decisions that go into the future planning of projects and gatherings/events. (Financial statement provided to members on request).
Thank You's & Shout Out's - Wyllie Arthritis Centre who generously provide their function
room to us for each meeting. This is invaluable to us and we are very grateful. PHWA
Sponsor Gabrielle Worthington from Dependable Laundry Solutions. She is very generously
sponsoring us for the support group "PHan Mail" magazines to be printed. Connect groups
who continue to support and guide our group, Carers WA who are there to offer assistance
to our carers, and to our Volunteers, family & friends who work tirelessly to support our
team and its members; we greatly appreciate your assistance, kindness & reliability.
Support Group Meetings - PHWA Please advise if transport is needed we'll do our best.
Meeting Dates for 2017 - Tuesday's 11.00am - 2.00pm, registration 10.45 DATES: Feb
17th, April 11th, June 13th, Aug 15th, Oct 17th, and Dec 5th annual Xmas party. Catered
Lunch support group gatherings: cost per person $12.00 pp (subject to change, please
advise dietary needs) - Menu will consist of a Roast dinner with a dessert to finish. Catered
by the Nourished Cafe Wyllie Centre. Morning tea and dessert is supplied by PHWA.
PHWA will be closed during the festive season.
Landsdale Forum Centre
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Ingredients Needed for your Gingerbread Crinkle Cookies
3 cups all purpose flour 3/4 cup dark brown sugar, packed 3/4 teaspoon baking soda (bi-carb) 1 tablespoon ground cinnamon 1 tablespoon ground ginger 1/2 teaspoon ground cloves 1/2 teaspoon salt 170gms butter, softened, but still cool, cut into cubes 3/4 cup molasses or golden syrup 2 tablespoons milk Powdered sugar (icing sugar) for rolling cookies
Instructions & Method
1. With an electric mixer (either hand or stand) stir together the flour, brown sugar, baking soda, cinnamon, ginger, cloves and salt at low speed until combined, about 30 seconds. Stop the mixer and add the butter cubes. Mix a medium-low speed until the mixture sandy and resembles fine crumbs, about 1/1/2 minutes. Reduce the speed to low and, with the mixer running, gradually add the molasses and milk. Mix until the dough is evenly moistened, about 20 seconds. Increase the speed to medium and mix until thoroughly combined, about 10 seconds.
2. Scrape down sides of mixing bowl and cover with plastic wrap. Refrigerate the dough 2 hours or
overnight so it becomes firm. (Can also be frozen) 3. Preheat the oven to between 180-190 fan forced, and line two baking sheets with baking paper. 4. Take the cookie dough out of the fridge and begin rolling the dough into small to medium balls
(alternatively you could use a small ice-cream scoop) about 2 inches in diameter. Be careful not to overwork the dough as it will lose its chill and get too warm. Roll each ball in either granulated sugar until coated. Transfer ball to icing (powdered) sugar and roll again until coated evenly. Place the coated cookie dough balls about 1 inch apart from each other on the lined baking sheets.
5. At this stage you can refrigerate them again for up to 30 mins (this helps retain their shape) or go ahead
and bake the cookies until set in the centres, 10-12 minutes. Do not over bake. Cool the cookies on the baking sheets for 2 minutes, then remove the cookies to a wire rack to cool to room temperature. They should be slightly crunchy on the outside and softer inside.
Notes
Store the gingerbread crinkle cookies in an airtight container at room temperature for up to a week. Suitable for freezing up to 8 weeks. Dough can be frozen as a whole ball wrapped in plastic or in prepared rolled balls. Snuggle up with a favourite Christmas movie and a cuppa and enjoy a crinkle or two! Also good to leave out for Santa on Christmas Eve with a glass of milk, enjoy and Merry Christmas.
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Order your FREE car dashboard PSA (public service announcement) Place it beside your ACROD permit on the dash, from the PHWA's Invisible Diseases Project.
PHWA Patient Registry - phwa.info To become a registered person living with PH and receive resources and information
especially tailored to your needs. All information provided is strictly confidential. Go to phwa.info/communityspotlight/patientregistrywa
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This amazing organisation is a unique community based organisation providing support and assistance to individuals and support groups with start up, ongoing development, training, advocacy and networking. The peak body for coordinating all support groups registered with them in the state of Western Australia. These groups number in the hundreds and are managed by an incredible talented and focused team of individuals led by an innovative and inspiring CEO.
This team works tirelessly to bring us education, training, support, and grants to help us see our dreams become a reality and execute our projects to build up our individual groups. For those of us who run support groups or are looking for training and further education to re-enter the work force these services have proven to be pivotal in our mental health management, self esteem, isolation & knowing we are part of a bigger picture all working together, which ultimately helps us to strive forward each day regardless to our individual health concerns and circumstances.
2016 was another busy year for the team as they executed their grants programs - Live it Forward - Pay it Forward and so much more. PHWA were fortunate enough to be the recipient of one of these grants which enabled us to produce the first ever PH Patient Pack and Invisible Diseases Project for those living with pulmonary hypertension. PHWA was also lucky enough to be included in one of the Consultative Groups that helps to brain storm and be a part of the process for future possible projects and programs. We have learnt so much and are so grateful to them all for all the friends we have made and the amazing network that has been created. This special team of people have made a real difference in the lives of so many including ours; we could not do without them. Thank you from the team at PHWA.
The Connect Groups Team at the National Networking Event - 2016 Hundreds of members attended this amazing Carnival themed day to participate in work shops, mini bites and network with other valuable organisations. The guest speakers were an inspiration and the panel for question time showed the vast array of needs and groups operating in WA. It was great fun and beautifully presented and really well organised with individual bagged lunches, cupcake towers at morning tea, trade stands with great give aways, and much more. A valuable day for us to have been included in and we thank them for this opportunity to come together.
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National Awareness Day Expo 2016 This year's National Awareness day was another success with many organisations in attendance once again. Braving the dodgy weather the team organised another great day of networking and being available to the passing public with multiple stalls holding a huge variation of information for people to look at and talk about. Entertainment was organised too and the team did another amazing job.
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The PHWA Adopt a PH elePHant project
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PHWA November Awareness Fundraising Expo
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goodhealth. Tips for living well with PH by Serena Lawrence, Blogger - In life with PH
Do you practice self-care? It might sound like a silly concept, especially for people who are used to taking care of other people. However, it is important that every person gives care to themselves. I never practiced self-care until I was diagnosed with pulmonary hypertension. Unfortunately, it took that heavy diagnosis for me to learn to stop and smell the roses. People with pulmonary hypertension and their caretakers need to take time for themselves. Self-care can range from taking your medication every day as prescribed to doing something small for yourself that simply makes you feel good and is good for your general well-being and mental health. Below is a list of 7 little things that I learned are okay to do in order to care for myself.
1) Stay in Your Pyjamas Having a day where you’re not feeling so great? There is a reason we wore jammies on the days we stayed home sick from school. Dressing comfortable will make it easier for you to nap, or just rest wherever you sit or lay. 2) Take the Elevator Instead of the Stairs In this day and age when people are obsessed with counting steps because of FitBit, it is totally okay for YOU to move at your own pace. Do whatever you need to do to make your world more accessible. This includes using one of those fun turbo scooters at the Target store. (I have used one a few times and it made me feel like Johnny Knoxville. Beep beep!) 3) Cancel Plans Had plans to go out to dinner with your friends this weekend? Woke up feeling awful? It is okay to cancel those plans. Your true friends and your family will understand that you may not always feel up for doing everything. Sometimes you might be too tired or in too much pain or discomfort to truly enjoy being social. The important people in your life would rather you stay home and take care of yourself than push yourself too hard. At the same time, sometimes I feel like I might be too depressed to see my friends or loved ones. Sometimes I will cancel. But sometimes I will push myself out. The times when I do push myself, I usually feel a little better after leaving the house and having a nice time with my friends. It is important to know when to cancel your plans to take care of yourself, and when seeing your friends and having a change of scenery could help lift your spirits.
4) Have a Spa Day Once a week I try to treat myself to a spa day— at home. Why would I need a spa day? Sometimes living with pulmonary hypertension can feel like a full-time job. I feel like I need to treat myself to something small, but special, that will help me relax and restore. About once a week I have a Lush Bath Bomb or Bubble Bar, along with a face mask. It feels like I’m sitting in a big cup of unicorn tea. And no, spa days aren’t just for ladies! Just be sure that your bath isn’t too hot! If you are not comfortable taking a bath, a nice foot bath does the trick. Fill up a big bowl, or some of your tub with warm water, and add some Epsom salts and a little bit of bubble bath. Voila, luxury! 5) Have Fun Do not feel guilty for having fun. Don’t avoid doing something special in fear of what other people may think (for example, doubting the severity of your illness.) Go on vacation. Try eating at a new restaurant. Go out with your friends. Save up and buy yourself something special. Do whatever you enjoy, are able to do, and that which is special to you and makes you happy. Don’t let what other people might think stop you from going out and enjoying your life. 6) Cut Negativity and Stress Out of Your Life Easier said than done (I know). If there is any negativity that you are able to cut out of your life, do not hesitate to do it. I know that stress can often make my symptoms feel worse, so I tried my best to remove the people and things in my life that weren’t healthy for me. To cope better with the stressful things I cannot control, I try to practice mindfulness and meditation on a daily basis. 7) Cheat With a Treat Last but not least, don’t be afraid to cheat with a treat! I know that many of us try to become healthier in terms lifestyle and diet after being diagnosed with pulmonary hypertension. However, I think each one of us needs a treat to look forward to everyday — or a treat after a particularly hard day. On a daily basis, I have at least one cup of organic tea that is low to no caffeine. This is usually one thing I like to do for myself that I really enjoy. I just find having a cup of tea so soothing! Sometimes I also treat myself to a square of organic dark chocolate, or another treat that is still slightly healthy and has some health benefits. For a real tough day, I keep some frozen cupcakes in my freezer. I have one after every pulmonary hypertension related doctor appointment. (However, the cupcakes that I have are gluten-free, dairy free, and made out of healthier and whole ingredients compared to your average baked good!) You can still cheat, and still try to stay within the lifestyle changes you have made. It is all about finding the right balance for you! What would you add to the list? PAGE 11
When I was diagnosed with pulmonary hypertension, a lot of friends and family left my life. I heard from some that they simply didn’t know how to handle my diagnosis, or the situation. I understand that it can be difficult to support anyone through a serious diagnosis, such as pulmonary hypertension.
Being the friend, partner, and parent of someone with pulmonary hypertension doesn’t come with an instruction manual. It can be difficult for other people to know what to say, or how to support me. Unfortunately, the kind of compassion and patience that is often required to help support a friend through their pulmonary hypertension diagnosis is not universally taught.
I want to share what I have observed through my own friendships, in hopes that it can provide some insight to anyone who isn’t sure what to do or say to friends with pulmonary hypertension. Illness can be a difficult thing to face, both for patients and their support system.
1. Sometimes lending an ear is more helpful than having all the answers.
It can be hard to know what to say when someone is speaking about their fears of living with pulmonary hypertension, or discussing their treatments, or even the horrible, long day they had at the hospital. Often, people want to be “fixers.” They want to be able to give advice in order to help the situation. Alas, this isn’t always possible. Sometimes the most supportive thing you can do as a friend is to just listen, especially without judgment. You may think that simple solutions are right in front of you to share, but it is important to remember that your situation is probably very different from your friend’s. In certain situations, your friend may not be looking for advice. — just someone to share their highs and lows with. If you feel as if you are stuck in a situation where you have no idea what to say, it may be best to just offer your support by listening. You can always ask, “What can I do to help you?” if you feel like there is a way you might be able to help.
2. Conversation as usual
I realized that after diagnosis my friends didn’t know what to talk to me about anymore. This was part of the reason some people avoided me. What did you used to talk about with your friends? “The Bachelor”? How Starbucks Canada doesn’t actually have almond milk yet for your Pumpkin Spice Latte, even though it promised it would? You can certainly still talk about those things. Your interests are probably what initially bonded your friendship.
Personally, I don’t want to always talk about pulmonary hypertension or being sick. At the same token, I am sure my friends and family don’t want to hear about it constantly, either. Many things change after diagnosis. I know that I have changed. Is there any way to go through such a heavy diagnosis unscathed? However, I still really appreciate catching up with a good friend over a cup of tea. I want to be able to enjoy my friends’ company and have a good laugh (and, sometimes, a good cry).
3. It is OK to say ‘That Sucks!’
How many times have you heard “keep a positive attitude” when facing a big hurdle? I think having a positive mindset can certainly help alleviate some kinds of suffering, those we are in control of. However, with pulmonary hypertension, a lot of things are out of our control. I’m not sure that it would be human, or even healthy, to ignore feelings like sadness when setbacks happen.
It is important for the person who is suffering to have the opportunity to try to find the bright side. But it can sometimes feel like our struggles are being undermined when an able-bodied person tells us to stay positive when we’ve just had a devastating setback.
While being positive can be powerful for you and your mental health, it is important to know when it is OK to be positive and when it is OK to be realistic. Simply put, when things suck, it is OK to admit that things suck! It is OK to agree with your friend about their day or situation sucking as well!
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Of course, being positive isn’t a negative thing. Just be sure to be mindful of the situation. For example, women with PH are strongly advised to not get pregnant because of the associated risks. It is unlikely that I will ever get pregnant, and I may never feel comfortable being a parent because of my health. In an effort to be supportive, my family used to say “maybe you will have children someday!”
I would rather have them agree that this situation sucks, big time! When they are still staying positive about the situation, they are unable to understand what I am going through or even grieve with me over that loss. They cannot understand my loss if they are still believing that something is possible, when it more than likely is not.
4. Take care of yourself, too
It can be difficult to support someone through a serious illness like pulmonary hypertension. It takes very special people, those both selfless and caring, to hold our hands through these hard times. At times, people can feel selfish for having their own needs.
It is so important to take care of yourself in order to care of others and to keep yourself well! It may be challenging to emotionally support a friend with an illness, and that is understandable. Don’t be afraid to acknowledge your own feelings and tend to yourself, as well.
You may have your own sets of challenges in life. Do not be afraid to talk about your own struggles as well. Friendship is a two-way street, and often we want to have the chance to support you. Your challenges may be different from someone with PH, and that is OK! Life happens differently to everyone.
Thank you to my wonderful friends and family who continue to support me.
“If you have a loved one who suffers, you can be a compassionate ally for him … Play the role of a bell of mindfulness. Your squeezing the hand is like a bell, lovingly calling your friend to come back to himself. That squeeze means, ‘I am here for you. You don’t need to do anything but breathe.'”
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GLOBAL NOVEMBER PH AWARENESS MONTH "2016"
Heart2CurePH Project 2016
PHA USA
Phaware/Podcast
project 2016 phaware.global
The opportunity to watch and create
your own podcasts with your story or
message.
PHA Canada - PSA video's 2016
The Pulmonary Hypertension Association of Canada marked November PH Awareness month 2016 with the release of two new video PSA's. The 30 second video's aim to raise public awareness of the symptoms of PH and the impacts of this rare, potentially fatal disease. The PSA's feature PH patients and caregivers from British Columbia, Canada who demonstrate the significant impact PH has on their daily lives. The PSA's also explain the main symptoms of PH and encourage viewers experiencing such symptoms to speak to their doctors about PH. The video's were produced in partnership with filmmaker Tyler Gamsby (Creek Water Media) and have been approved by the Television Bureau of Canada.
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PHWA November Awareness
Project 2016
Patron to PHWA Professor Eli Gabbay launches the project "Don't ignore the elephant in the room, pulmonary hypertension". Adopt a PH baby elePHant and become part of the PHamily, adoption certificate magnet included.
At our October gathering we had the pleasure of the company of Patron to PHWA Professor Eli Gabbay who came along as our guest speaker to bring us up to speed on all the new and exciting changes and future projects planned for people living with pulmonary hypertension. He gave an informative and hopeful presentation as well as launching our November Global PH awareness project. The baby handmade knitted elephants were very well received along with the home made shortbread elephants, yum yum! This project was a huge success and we thank all our knitting ninjas for their generosity with their time and materials to make this project a reality.
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PH CUS
ALLERGY & HAY FEVER SEASON
Hay fever and allergy season is upon us in full force especially here in Western Australia. I for one haven't stopped itching, sneezing and coughing. I prayed for spring after our long winter and now I want winter back! This comprehensive article is shared with you by our sister group LIFE from their Breath of Life magazine spring edition and is packed full of interesting facts and tips on how to cope. Before there was the Institute for Respiratory Health, there was the Lung Institute of Western Australia (LIWA), its earlier incarnation. But did you know that even before LIWA, there was the Asthma and Allergy Research Institute? So allergy and asthma are topics close to the core history of the Institute for Respiratory Health. With spring about to come into bloom it’s timely to visit this topic that affects millions of Australians.
Allergic disease in Australia Allergies have emerged as a major public health problem in developed countries during the twentieth century. Australia and New Zealand have among the highest prevalence of allergic disorders in the developed world. A 2007 report 5 estimated that 4.1 million Australians (19.6% of the population) had at least one allergic disease. The highest prevalence of allergies is in the working age population aged 15-64, where 78% had allergies. Allergic diseases include asthma, eczema, hay fever, insect stings and food allergy. Severe allergic reactions may cause life threatening anaphylaxis. Since it’s the start of spring we’ll focus here on hay fever, or known by its more accurate name, seasonal allergic rhinitis. In a future issue we will look at other allergic conditions.
Hay Fever Pollen from grasses, weeds or trees can trigger symptoms of allergic rhinitis (hay fever) and asthma. Pollen seasons can last for several months and exposure is difficult to avoid. However, there are several ways to prevent or reduce symptoms.
What is pollen? The word pollen is derived from the Greek word meaning 'fine flour' and the role of the pollen grain is to fertilise the female flower to reproduce plant species. Pollen grains can be spread by birds, bees or wind: Some plants (such as flowering plants, including wattle trees) produce small amounts of pollen which are distributed by birds and bees from one plant to another. Other plants (such as pasture grasses and weeds) rely on the wind to spread their pollen. These pollen are produced in vast quantities, blow long distances and cause allergies in people, even if they live a long way from the source.
Fast Facts for
Australia & New Zealand Hay fever (allergic rhinitis)
1/10 children aged 6-7 years 1/6 children aged 13-14 years
2/5 adults Asthma currently affects
1/5 children 1/10 adults
Eczema currently affects 1/6 children aged 6-7 years
1/10 children aged 13-14 years 1/14 adults
Most of the pollen that causes allergies in Australia is produced by airborne pollen from grasses, trees and weeds of plants originally grown in the northern hemisphere. Improved pasture grasses are more allergenic than Australian Native grasses. Pollen from exotic trees, which are planted for their autumn colours, is more allergenic than pollen from Australian trees. Several types of weeds with highly allergenic pollen have also been introduced, including:
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Pellitory weed (commonly known as asthma weed) was accidentally introduced in a shipload of marble from Italy in the early 1900s. It is mainly found in Sydney. Paterson's Curse (Echium plantagineum) is an attractive flowering plant that was deliberately brought from England in the late 1800's by Dr Paterson. This plant has taken over large tracts of pasture in rural Australia and produces highly allergenic pollen.
Ragweed and Parthenium weed were introduced in pasture seed imported from the United States. They have spread throughout Queensland and northern New South Wales.
Pollen allergy causes hay fever The correct name for hay fever is seasonal allergic rhinitis. As early as the early 1800s it was known that pollen, rather than hay, was the cause, the term hay fever is still commonly used. Allergic rhinitis symptoms are caused by the body's immune response to inhaled pollen, resulting in chronic inflammation of the eyes and nasal passages.
Allergic rhinitis symptoms include: Runny, itchy, congested nose Irritable, itchy, watery and red eyes Itchy ears, throat and palate.
Allergic rhinitis is a common and debilitating disease Allergic rhinitis affects around 1 in 5 people in Australia and New Zealand Allergic rhinitis predisposes people to more frequent sinus infections People with allergic rhinitis often suffer from fatigue due to poor quality sleep Moderate or severe allergic rhinitis impairs learning and performance in children, results in more frequent
absenteeism in adults and reduced productivity, and therefore can cause considerable impairment in quality of life.
Around 8 in 10 people with asthma have allergic rhinitis, and having allergic rhinitis can make asthma more difficult to control.
Pollen can also trigger asthma Some people with moderate or severe allergic rhinitis believe that their allergic rhinitis 'turns' into asthma or that it makes them tight in the chest or wheeze. However, pollen can directly trigger asthma as well as allergic rhinitis. Small particles of allergens can penetrate deep into the airways of the lung. Thunderstorms can also contribute to this: When pollen granules come into contact with water, starch granules are released that are small enough to be breathed into the airways, causing allergic rhinitis and asthma in some people. If you wheeze mostly during spring - summer, see your doctor for appropriate advice.
Pollen seasons can last for several months Pollination times vary with the plant variety and location. For example, trees pollinate in late winter and early spring. Grasses flower next, and the weed 'Plantain' flowers from August through to May. Grass pollen numbers are also higher in inland areas, where there are no natural barriers to wind dispersal. In Australia pollen numbers are lower on the east coast where the prevailing winds come from the sea and where there is protection from westerly winds by the Great Dividing Range. In South Australia and Western Australia, the concentration of pollen can vary according to the prevailing winds. Pollen numbers are higher on the Victorian south coast because the prevailing winds are from the north carrying pollen from the northerly grasslands. The principal grasses growing in the northern coastal areas are subtropical and mainly flower between January and March.
Allergenic grasses in the southern part of Australia are mostly Northern hemisphere grasses, with the main flowering period October to December. White Cypress (Murray) Pine is the only Australian tree that produces highly allergenic pollen. Its growth extends from the western slopes and plains of Eastern Australia across to Western Australia, south of the Tropic of Capricorn and it flowers from late July through to the end of August. Wattle (acacia) trees are frequently blamed for early spring symptoms but allergy tests (skin prick tests) seldom confirm that. There are many species of casuarina or Australian oak trees, which produce pollen throughout the year and may cause allergic rhinitis symptoms at any time of the year.
Diagnosis is important If you get hay fever it is important to get it properly diagnosed. A doctor should take a careful history of when you get symptoms, what plants and trees grow in the area and whether relief is obtained by going away on holiday. When this history has been obtained, confirmatory allergy tests (skin prick tests and/or blood allergen specific IgE tests) might be performed using allergens which are appropriate for the area of residence and work. The relevance of the test results can then be interpreted by a doctor trained in allergy, in conjunction with your history.
Tips for reducing pollen exposure Stay indoors until after midday, if possible, to reduce your exposure to pollen, particularly in the pollen season and
on windy days PAGE 17
Try to avoid going out on windy days or after thunderstorms Wear sunglasses to protect your eyes Do not mow the grass. Stay inside when it is being mown (by someone else). If mowing is unavoidable, wear a
mask or consider taking a non-drowsy antihistamine if your doctor has suggested this Consider planting a low allergen garden around your home Keep windows closed both at home and particularly when in your car (and where possible use recirculating air
conditioning in your car) Do not picnic in parks or in the country during the pollen season Try to plan your holidays out of the pollen season or holiday at the seaside If you are sensitive to particular weeds or trees that outside your bedroom window, have them removed If landscaping at home, research plants less likely to trigger allergic rhinitis or asthma. Shower when you arrive home and rinse your eyes frequently with water Carry a supply of tissues
Effective treatments available Ask your pharmacist or doctor about medications or treatments that can relieve your symptoms. Although medications do not cure allergies, they are much more effective with fewer side effects than medications available 20 years ago. You just need to know the best way to use them, and avoid medicines that can cause you extra problems. For example avoid frequent use of decongestant nose sprays or tablets.
Antihistamine tablets or syrups (non-sedating, like Zyrtec, Telfast or Claratyne) help to reduce symptoms (sneezing, itchy and irritating eyes), but they are not as effective in controlling severe nasal blockage and dribble. The advantage of antihistamines is their flexibility; you can take them when you have problems, and avoid them when you are well. Antihistamine eye drops can also be helpful in controlling watery eyes due to allergies.
Intranasal corticosteroid nasal sprays (INCS) (like Beconase and Flixonase) have a potent action on inflammation when used regularly (like asthma preventer medications). These need to be used regularly and with careful attention to the way in which they are used. Different brands of INCS vary in strength and effectiveness, so it is important to read the labels and check details with your doctor or pharmacist.
Combination medications containing an antihistamine and intranasal corticosteroid nasal spray (Dymista) are available and offer the combined advantages of both medications.
Decongestant sprays (like Otrivin) unblock and dry the nose, but should not be used for more than a few days as they can cause long term problems in the nose. Decongestant tablets (like Sudafed) unblock and dry the nose, but should be used with caution as they can have 'stimulant' side effects like tremors, trouble sleeping, anxiety or an increase in blood pressure. People with high blood pressure should not take this medication. Combination medications containing an antihistamine and decongestant are also available, but these need to be used with caution as the decongestants can cause many side effects. Telfast and Claratyne both have combination forms like this.
Natural products such as salt water nasal sprays or douches can be effective in relieving symptoms. Appropriate management of 'pollen asthma' includes commencing anti-inflammatory asthma medication either preventatively or with the first 'wheeze' of spring. Some patients undergoing allergen immunotherapy for their allergic rhinitis find that their seasonal asthma improves as well.
Allergen immunotherapy - a long term treatment option Medications only reduce the severity of symptoms and do not cure allergic rhinitis. Another treatment option is allergen immunotherapy (also known as desensitisation), which switches off the allergic reaction, by repeatedly introducing small doses of allergen extracts, by injection, drops under the tongue or tablets. Allergen immunotherapy is a long term treatment usually given over a few years. You would need to see a clinical immunologist or allergy specialist to determine if this is suitable for you.
More Allergy, the website of ASCIA, The Australasian Society of Clinical Immunology and Allergy is the peak professional body of Clinical Immunologists and Allergists in Australia and New Zealand.
DISCLAIMER: Always check with your treating PH centre or Doctor before starting any new medications for their input and advice.
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Condolences for the Founder of the Heart & Lung Transplant Foundation WA
We are deeply saddened to advise the loss of our founder and friend. Yvonne Bali (nee Cox). The Heart & Lung Transplant Foundation was formed in 2004 through the tireless efforts of Yvonne, who championed our worth cause. After lifesaving double lung transplant surgery in 1999, Yvonne met with WA builder Garry Brown-Neaves of home builder Webb & Brown-Neaves; who compelled by Yvonne’s story, build a charity home, with proceeds from the sale securing our Foundations future. This amazing effort has enabled subsequent lifesaving transplants through state of art equipment; and continues to enable quality of life for our heart and lung transplant patients in Western Australia. We thank Yvonne for all that she has done for the heart and lung transplant community; we will miss you and always remember you. Our deepest sympathies to the family. From the HLTF Board past and present, members and staff, past Patron of the HLTF, Gary Neaves-Brown, who without his support fired by Yvonne’s passion to achieve her goal of lung transplants in Western Australia, the HLTF would not have started and Robert Larbarlestier and the awesome medical team at RPH and more recently at Fiona Stanley Hospital. Never forgotten.
Farewell & Good Luck from the Lung Leaders Network WA Committee
Dorothy Koh, formerly Membership and philanthropy Coordinator at the Institute for Respiratory Health. Due to financial constraints there’s been some staff restructuring at the Institute and Dorothy has left to seek other opportunities. Dorothy has been a good friend and supporter of L I F E and the lung leaders network WA of which PHWA are a member. We will miss her quiet and supportive presence and wish her the best in her future career and life endeavours. Thank you Dorothy and Good Luck!
PHWA farewells one of its long term members Mrs Dorothy Harris RIP August 2016
Dorothy was a much loved member of our support group and enjoyed attending the gatherings and socialising and being a part of our group. Her health declined suddenly late last year and she was in and out of hospital until she passed away peacefully this August. Her dry sense of humour will be missed and we send our deepest condolences to all her family and friends. Good bye dear friend. PHNA
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PHWA at your fingertips
Pulmonary Hypertension Network Australia Home Base: 144 Hellfire Drive, Darch WA 6065 T: 08 9302 3078 - M: 041 893 0291 E: [email protected] FB: facebook.com/pulmonaryhypertenisonwa Web: phwa.info
Lung Health Support Groups in WA All affiliated with Lung Foundation Australia - www.lungfoundation.com.au
NAME OF GROUP CONTACT PERSON - TELEPHONE & EMAIL TYPE OF GROUP Lung Information & Friendship for
Everyone (LIFE) Support Group
Jenni Ibrahim - Coordinator 9382 4678 - [email protected] (Facebook)
All Respiratory Diseases
Pulmonary Hypertension Network Australia (PHWA) Support & Information Team (website coming soon)
Melissa Dumitru - Coordinator & Patient Educator 041 893 0291 - 9302 3078 - [email protected] [email protected] (Facebook)
PH Idiopathic PH related diseases Transplant/Rare disease
Altone Improvers Michael Lim - 9224 1651 [email protected] Respiratory
Bentley Bronchiatrix
Mike - 9359 2025 [email protected]
Respiratory
Rockingham Respiratory Support
Jan - 9528 2965 [email protected]
Respiratory
Heavy Breathers - Midland Walkers! Bernice & Greg - 0418 415 200 - 9250 4091 [email protected]
Respiratory
Huffers & Puffers Meets at RPH, contact Sandra, Respiratory Educator T 9224 2903 E [email protected]
Respiratory
Northern Easy Breathers Support Group Meets Heathridge Leisure Centre, Contact John M: 0412 017 789
Respiratory
South West Impaired Lungs Support (SWILS)
Support Group meets at Bunbury Library - contact Janelle & Barry M: 0429 631 559 E: [email protected]
Respiratory
Wheat belt Wheezers
Geraldton
Australian Online Groups
Search for group at groups.yahoo.com
Contact Colin Easther 0468 452 962 [email protected]
Contact Liz Whitehurst T 99561989 E [email protected]
(Use free Yahoo email account) Lungaroos (Aus & NZ) Bronchiectasis, Alpha 1 Antitrypsin Deficiency, Ozlung
Respiratory Respiratory
Respiratory Online
Useful Useful ContactsContacts
NAME OF ORGANISATION CONTACT DETAILS Carers WA T: 1300 227 377 - www.carerswa.asn.au Arthritis Osteoporosis Foundation WA T: 9388 2199 - www.arthritiswa.org.au - Scleroderma Support Group Health Consumer Council T: 9221 3422 - Freecall: 1800 620 780
E: [email protected] - W: www.hconc.org.au Lung Foundation Australia T: Toll Free 1800 654 301 - www.lungfoundation.com.au Silver Chain T: 9242 0242 - Country - 1300 650 803 - E: [email protected] Connect Groups Support Group Assoc. T: 08 9364 6909
Disclaimer & Advertising Policy Statement
Products and services advertised in PHan Mail magazine are not necessarily recommended by PHWA. Some readers may assume that anything that is advertised in these pages has been cleared, vetted or in some way approved by the organisation. This is not so in some instances. PHWA is not equipped to test and approve products and services that are available to the general public. Please exercise your own judgement about whether the item, service or information advertised is likely to help you personally and, where appropriate, obtain professional advice from your doctor or specialist. The information contained in PHan Mail magazine 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. We act as an information and support team only. Our logo, slogans & articles cannot be used without prior permission.
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