SUMMER 2019 The magazine for supporters of PHA UK www.phauk.org Move more this Love, PH summer and us 4-page special Andy and Lynsey feature share their story “I’ve learned Selexipag and that I’m stronger the treatment than I think” Alysha looks back on jigsaw a year since diagnosis Where does it fit? Plus... Supporting Handheld Our Medical the Transplant fans and conference humanities …and much, Games breathlessness in pictures explained much more! With this issue: Emotional wellbeing survey Can you help by sharing your voice? Pulmonary hypertension and emotional wellbeing Pulmonary This short survey has been designed to help ask for your name. We appreciate you sharing hypertension us understand how PH affects people on an your voice to help us to support people and emotional emotional level, to ensure we can provide the affected by pulmonary hypertension. best support possible for our membership, and wellbeing to provide an evidence base upon which to #StrongerTogether campaign for change. #BreathlessNotVoiceless We understand that some of these questions Please note this survey is for people with may feel quite personal, which is why we don’t a diagnosis of pulmonary hypertension. Dear friend, About you 6. Since being diagnosed with PH, have you asked for professional help for anxiety or Can you help us understand more about the emotional impact of pulmonary hypertension? 1. Are you: Male Female depression? (eg. Visited your GP, asked for In 2016, hundreds of people affected by pulmonary hypertension shared their voices in our major counselling or medication)? survey into what it’s like to live with the condition. 2. What is your current age? years Yes No 32% of those who responded to the Living with PH survey said it has a major impact on their mental 3. How many months / years has it been since Additional comments and emotional wellbeing, and 26% told us it has a major impact on relationships. you were diagnosed with PH? We’ve put together a short follow-up, and survey please to behelp assured us understand, that sharing in more your detail,thoughts how WILL PH affectshelp us to people on an emotional level. This is to ensure we can provide the best support possible for our membership, and to provide an evidence base upon which to campaign for change. Individual voices really matter Your emotional wellbeing 7. Since being diagnosed with PH, have you make a difference, as it has before. The more voices that come together, the louder they will be heard. received professional help in any of the 4. Do you think having PH has affected your following ways? (please tick all that apply) We know that some of the questions in the survey may feel quite personal, which is why we don’t ask for your name. And we would like to reassure you that the information you provide will be kept emotional wellbeing? . The postage has already been paid, so there is no need for a stamp. I have received counselling completely confidential and will only be used to input data. After that, it will be destroyed. No A little Some or talking therapy A lot Drastically If you are able to help, please complete the enclosed survey and use the freepost envelopeHow to return big an it impact I am currently receiving counselling to us by 15th August 2019 does PH have on your or talking therapy ? How big an impact relationships? 5. Since being diagnosed with PH, have you We appreciate you sharing your voice to help usdoes to PH support have on people your I have taken medication for anxiety and family experienced / been diagnosed with any general mental and or depression affected by pulmonary hypertension. of the following? emotional wellbeing 31.9% 26.2% Anxiety Depression I am currently taking medication Yours sincerely Major impact Major impact Other for anxiety or depression 55% 53.2% Some impact Some impact Additional comments Other Iain Armstrong Additional comments Chair of PHA UK 13.1% 20.6% No impact No impact PS. If you would like to see the full Living with PH report, please visit www.phauk.org or give the office a call on 01709 761450 and we’ll send you a copy. Pulmonary Hypertension Association UK www.phauk.org Registered Charity No. 1120756 Welcome Welcome to the summer issue of Emphasis. We hope the sun is shining as you’re reading We know that PH has an emotional “Thank you for this – wherever you may be! impact, but it’s important that we being part of find out just how many people are ou’ll notice a bit of a theme in affected, and how, so we can focus our journey” this issue. An increasing amount our support in the right places. Yof evidence points to the benefits of We’d really appreciate you spending getting active with PH, but we know a few minutes sharing your thoughts it’s not always easy to get started. and returning the anonymous That’s why we’ve dedicated a special questionnaire to us in the pre-paid feature to breaking down barriers and envelope provided. helping you to move more. Turn to Enjoy the summer, page 27 and get ready to be inspired. whatever you get up to. Continuing the subject of exercise, we’re delighted to bring you news of our sponsorship of the upcoming British and World Transplant Games. Read all about it and meet two participants from the PH community Iain Armstrong on page 22. Chair of PHA UK It was great to see so many of our [email protected] members and friends at our special 20th anniversary conference in May. The theme was #StrongerTogether and that’s what the PHA UK is all about – so thank you for being part of our journey. As well as strength in togetherness there is also strength in making ourselves heard, so we’ve included a special survey with this issue. 3 2019 emphasis SUMMER 12 ONE YEAR SINCE DIAGNOSIS Alysha Sharma on what she’s learned 23 THE TRANSPLANT GAMES ARE COMING Looking ahead to the British and World Transplant Games 18 CON HAPPY UK FE 27 R A E H N BIRTHDAY P C 20 E LET’S GET PHA UK! Anniversaryth 20 MOVING 32 Looking back at our special Celebrations LOVE, PH & US Why you should up your SELEXIPAG anniversary conference Andy and Lynsey share their story activity this summer Where it fits in the treatment jigsaw Living with PH... Latest News... Regular Features... CONTENTS 11 HANDHELD FANS 10 FELLOWSHIP AWARD SUCCESS 06 EMPHASIS EXCHANGE How they can help with breathlessness – with the PHA UK chair wins prestigious recognition Updates, letters and what you’ve been added benefit of helping you to keep cool this summer! saying on social media 15 DANCE SHOW FOR MATTHEW SUMMER BRINGING PEOPLE TOGETHER Two dance schools in Chorley, Lancashire showed NUTRITION Q&A 17 26 The University of the Third Age (U3A) aims to bring their support for a young member who has PH. Our new regular feature with the PHA UK’s Shaun people together to continue their educational, social and Clayton. This issue: Gaining weight the healthy way 2019 creative interests. Could it help you live well with PH? 31 COHORT STUDY SEEKS RELATIVES More blood relatives are needed for an important 34 GREEN LEAF CREW 37 FOCUS ON WELLBEING: research project investigating the genetic causes of Meet ten-year-old Aaron and learn what to look SPOTTING THE SIGNS OF BREAST CANCER PAH, and how genetic mutations affect outcome and for in rock pools A guide to checking your breasts response to treatment. 36 REVIEWS 43 DEMYSTIFYING MEDICAL HUMANITIES 45 PEAKS FOR PHA Find out what our reviewers think of a walking app Ever heard the term ‘medical humanities’ but been The team mixing football with fundraising to raise and a book by Ruby Wax confused about what it means? Our expert unpicks it £10,000 – and lots of awareness along the way in this special feature 46 THE INTERVIEW 49 GIVING BLOOD With Robin Condliffe, consultant respiratory 50 HOMECARE DELIVERY EXPLAINED Billy’s experience, and how you can help physician in the Sheffield Pulmonary Vascular This magazine is printed on paper By consultant pharmacist Neil Hamilton Disease Unit from sustainably managed sources Social Media Round-up Top tweets and popular posts from PHA UK's Facebook and Twitter pages 10 exchangeDRIVING WITH PH Important information about what you need to tell the DVLA Laura Richards WITH THIS ISSUE NEW LUNGS,34 OF EMPHASIS... 812 miles to cycle from Breathless Emphasis NEW LIFE not voiceless The results of our We went from two full We can’t go abroad, time incomes to living research into the because we can’t Teenager Charlie’s purely off benefi ts. afford the insurance. financial impact I just feel like I’m begging Bilbao to Gibraltar. I’ve been forced to take ill remarkable all of the time. I’m health retirement… of PH begging for what I feel like I’ve lost transplant journey I’m entitled to. my identity. For a copy of the full report, which includes all the fi ndings from the research, please email FULL REP offi [email protected] or call 01709 761450. ORT | March 2019 Benea th the surface The true fi nancial Pulmonary Hypertension Association UK impact of pulmonary hypertension. PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffi eld, S35 2PH Tel: 01709 761450 Email: offi [email protected] Website: www.phauk.org Registered Ch Published March 2019 arity No.