Insights gathered from conversations with people living with pulmonary arterial hypertension (PAH) around the globe have shown us that many fear that their quality of life will be limited after their diagnosis.
In fact, many people living with PAH can safely pursue a variety of life choices with the guidance of their healthcare teams and good management of the condition.
Here is just a small selection for inspiration…
Showcasing the achievement of those living with pulmonary arterial hypertension.
BOSNIA AND HERZEGOVINA,
STUDENT AND NGO PROJECT MANAGER
"TO LOOK BEYOND MY PAH DIAGNOSIS AND HELP OTHERS ACHIEVE THEIR GOALS."
- AMINA'S STORY
At the age of 18, Amina became breathless and dizzy during a volleyball match that, after a stay in hospital, led to her diagnosis of PAH. At the time she was planning to study medicine at university, which she was then advised against.
Amina took it upon herself to become an expert in the condition and after researching universities that were best suited to students with additional needs, Amina applied for a Master's degree in International Finance and Banking. One major benefit of her course is the option to watch lectures and complete tests online when she is not well enough to attend in person. In addition to her studies, she has also completed internships in administration and finance, with flexible, four-hour working days and remote working opportunities that best complement her life with PAH.
Currently, Amina is supporting a local non-government organization (NGO) project to help empower 300 unemployed women through developing new skills to increase employability, as well as positivity and reduce stress. Leading by example, Amina enjoys a wide array of hobbies with a focus on art and homemade crafts, which keep her feeling balanced when times are hard.
She is grateful for the opportunity to do philanthropic work, which she says allows her ‘to look beyond my PAH diagnosis and help others achieve their goals.'
STUDENT, PERFORMER AND PLAYWRIGHT
"IF YOU REALLY WANT TO DO SOMETHING, TRY IT, BUT DO NOT FIGHT THE DISEASE – EMBRACE IT AS A PART OF YOUR LIFE AND YOU CAN ACCOMPLISH SO MUCH."
- LIV'S STORY
Liv was diagnosed with PAH at just one year old. Growing up, she had to learn how to manage her disease while attending school and physiotherapy. Having had PAH as long as she can remember, Liv doesn't consider the condition to affect her daily life as such, although it is a part of her that she feels important to tell others about. Once people understand what PAH is and what it means to Liv, they can accept it and move on.
Theatre is Liv's biggest passion and she has been involved in several major theatre performances over the past year. She has even written a play herself. When spending time with her friends outside of school, they often go to see plays at the local theatre, which provides an enjoyable form of escapism from any other worries.
In 2018, Liv is taking on her greatest adventure yet: moving to Australia for one year as part of a student exchange. This is a huge milestone after being advised against all travel as a young child and one that Liv is confident to reach this year. A testament to her belief: ‘if you really want to do something, try it, but do not fight the disease – embrace it as a part of your life and you can accomplish so much.'
"I HAVE PAH, BUT PAH DOESN'T HAVE ME."
- ANDJELA'S STORY
Five years ago, Andjela was an active volleyball player. When she began to experience chest pain, struggled to walk and had to take each step slowly, the contrast of capabilities came as a shock. Accepting the diagnosis of PAH, a disease no one she knew had ever heard of before was very difficult for Andjela. She often felt upset that others didn't understand why she couldn't keep up with them, due to the ‘invisible' symptoms of PAH. Embracing a shift in her mentality, Andjela believes that truly accepting her diagnosis was the first step to being fully happy again.
Now taking PAH in her stride, Andjela is training to become a physiotherapist to help others through rehabilitation. On top of her studies, she enjoys cycling, walking and swimming. Above all, she enjoys spending time with her friends at university, whether out at dinner or the disco, when she is able to forget she has PAH. Being a part of university life has given Andjela a new positive outlook on life and taught her not to look back on the bad days, but look forward to a better tomorrow.
While she accepts that PAH is a part of her life, she refused to let it define her and stands by the statement, ‘I have PAH, but PAH doesn't have me.'
PERSONAL CARE ASSISTANT
"NEVER GIVE UP, BECAUSE I NEVER GAVE UP AND NOW I FEEL VICTORIOUS."
- CATARINA'S STORY
After being born with a congenital heart defect, Catarina underwent heart surgery when she was only six months old. At the age of ten, she was diagnosed with PAH and advised to stop all forms of exercise immediately. As a consequence, Catarina was bullied by others at school and felt isolated when she could not join her friends in sports and swimming classes. After overcoming her difficult teenage years, Catarina has found new confidence in herself and feels that adults are much more accepting of her condition.
Working in her local hospital had been an ambition for Catarina for some time. Despite initial concerns from her mother and doctors that the job might be too tough for her, Catarina has successfully been a personal care assistant for the last three years and is proud to be able to support the nurses on the wards. At first she found the long hours on her feet very tiring. However, she now has more flexibility and has learnt how to adapt which tasks she completes depending on how well she feels.
Catarina has also taken the time to focus on her personal life in parallel to her career. In September 2019, she is getting married and plans to go through the adoption process with her husband, so that they may safely start a family of their own.
Reflecting on the challenges she has overcome, Catarina would advise others to, ‘Never give up, because I never gave up and now I feel victorious.'
SHOP-STEWARD AND FOODIE
"MY DIAGNOSIS WAS NOT A LIFE-SENTENCE. I'VE FOUND MY OWN WAY TO BE HAPPY TAKING CARE OF MYSELF AND OTHERS."
- IRENA'S STORY
It took over two long years for Irena to receive a correct diagnosis of PAH, after which she struggled to manage her condition while maintaining her previous lifestyle. Under the pressure of it all, she quit her job and rarely left the house; decisions she now realizes were a mistake. Irena is grateful to her family and friends for encouraging her to enjoy life again. She began to take an interest in eating healthily to improve her condition, which led her to pursue a new career path: working at a sourdough and organic food shop. She quickly adapted to working in the shop and keeping up with the other staff, and enjoys helping others to choose healthy food options, a genuine interest of hers that was born from living with PAH.
Irena is looking forward to travelling to the seaside this summer where she plans to eat delicious meals, take photos and dance to great music. To stay busy through work, hobbies and spending time with friends is Irena's approach to a fulfilling life. She says, ‘My diagnosis was not a life-sentence. I've found my own way to be happy taking care of myself and others.'
JET-SETTER AND TRAVEL GURU
"YOU SHOULD FOCUS ON WHAT YOU CAN DO, NOT WHAT YOU CAN'T DO."
- JANA'S STORY
Jana has lived with PAH for the past decade, after receiving a diagnosis when she became increasingly tired and struggled to walk upstairs. Eighteen months ago, she was fitted with a pump to continuously infuse the treatment she needs to manage her condition. Rather than rejecting unwanted attention, Jana enjoys others' curiosity about the pump, which allows her to educate them about PAH.
Having thought she wouldn't be able to travel again when she was first diagnosed with the condition, through thoroughly researching the support available Jana is now confident going abroad. She works at a Czech start-up company that provides flight customer services and is building her experience in all sides of the business from marketing to finance. Through her chosen career, her passion for travel, love of camping and appreciation of the outdoors grows every day as she receives constant inspiration for where to explore next. This year, she is checking Asia off her list with a big trip planned with her boyfriend.
Living by the mantra, ‘you should focus on what you can do, not what you can't do', Jana believes her biggest achievement is being able to travel and see the world.
"IT IS SCARY AT FIRST, BUT YOU NEED TO LIVE YOUR LIFE YOUR OWN WAY AND NEVER BE AFRAID OF WHAT'S NEXT."
- MELINDA'S STORY
At 16 years old, Melinda experienced her first symptoms of breathlessness. A large blood clot was discovered in the artery to her left lung, before it stopped working altogether. After two months of treatment in the intensive care unit at hospital, she was given a diagnosis of PAH and told she may only have one year left to live. Now almost ten years later, through close management of the condition, Melinda is still going strong.
Melinda applied for and was accepted into a very competitive university, where she completed her studies to become a dietician. She even wrote her thesis on dietician in pulmonary hypertension, for which she achieved an excellent grade. Working as a fully-qualified dietician is incredibly rewarding for Melinda as she teaches others how to look after themselves and even prevent disease through optimal nourishment.
Melinda admits that living and working with PAH is an emotional and physical burden at times, and contributes some of her success to the unwavering support of her family and boyfriend. She advises others living with PAH, ‘it is scary at first, but you need to live your life your own way and never be afraid of what's next.'
"THE MOST IMPORTANT THING IS TO DO WHAT BRINGS YOU AND OTHERS JOY, SO DO YOUR FAVORITE THINGS AND YOU WILL FIND INNER HAPPINESS."
- NADIYA'S STORY
Nadiya was diagnosed with PAH when she was just seven years old, after presenting with a range of symptoms from shortness of breath and swollen legs to frequent nose bleeds. Walking long distances is still difficult for Nadiya and because of the limitations of public transport in her local area, travelling to and from work would be too much of a strain. Instead Nadiya has found ways to take pleasure in hobbies she can excel in from the comfort of her own home.
Embroidery is her favorite hobby and something that she has discovered a genuine talent for. As soon as she picks up the needle and thread, she feels her heartbeat calm and immediately forgets any worries. Embroidery provides a fulfilling outlet for her creativity as Nadiya sees her ideas come to life on the canvas. Among her finest works, many of which she gives away as presents, are richly embroidered pictures, clothes and an intricate portrait of a family tree.
‘The most important thing is to do what brings you and others joy, so do your favorite things and you will find inner happiness,' Nadiya advises others with PAH.
SPANISH PATIENT GROUP FOUNDING MEMBER AND FAMILY MAN
"I CAN'T DO THE SAME ACTIVITIES AS BEFORE, BUT DEALING WITH MY PH DIAGNOSIS HAS HELPED ME TO FIND A NEW RHYTHM IN LIFE AND ENJOY LIFE MORE INTENSELY IN EVERY MOMENT."
- PERE'S STORY
In 2015, Pere began to feel more tired than usual. Working 12-hour shifts as a waiter, he presumed his fatigue was because of the long hours and extra pressure at work. In the same year, he started to experience severe back pain and found it extremely difficult to breathe. Pere began to notice a slight stinging feeling when breathing, until one day he found he was unable to breathe for a whole minute. He went to the nearest hospital where they suspected pulmonary hypertension (HP) and referred him to a PH expert who confirmed his diagnosis.
As a result of PH, Pere felt so tired that he found daily life activities a struggle and couldn't even hold his own baby. Before his diagnosis, he enjoyed mountaineering, basketball and going out with friends. Despite being less able to do those activities after his diagnosis, Pere has now ‘found a new rhythm in life' and enjoys reading, going to the cinema and above all, having more time to spend time with his daughter.
Pere feels his greatest achievement has been to accept his diagnosis. Doing so has been enabled by participating in a patient organization, Hipertensión Pulmonar España, of which he is a co-founder and active member. Being a member of this organization has helped Pere 'feel alive again'. To anyone who has been newly diagnosed with PH, Pere recommends they join a patient organization in their country, as actively participating in such a group gives you a support base of peers who understand what you are going through and can answer your questions. Pere's diagnosis with PH has allowed him to 'spend more time with the people he loves, and enjoy life more intensely in every moment'.
PUBLIC AFFAIRS SPECIALIST
"WRITING HELPS ME BETTER UNDERSTAND MY OWN PH DIAGNOSIS. I FEEL GRATEFUL FOR THE OPPORTUNITY TO SHARE MY HEALTH STORY, NOT JUST FOR MY OWN WELL-BEING BUT TO LET OTHERS KNOW THEY ARE NOT ALONE. HOPE CAN COME FROM STORYTELLING."
- MIKE'S STORY
In the summer of 2015, Mike started to experience shortness of breath walking to work. Previously, he had enjoyed being active, regularly going for runs. With a misdiagnosis of asthma, his symptoms persisted and Mike began using oxygen therapy to treat overexertion from physical activity. It was not until he admitted himself into A&E, and was transferred to two hospitals in March 2016, did a vascular specialist diagnose Mike with pulmonary hypertension (PH).
Despite finding it more difficult to exercise since his diagnosis, Mike won't let PH dictate his life. Building on a successful career in US politics and government, working for a member of the House of Representatives and President Obama's administration, Mike now holds a busy full-time job in public affairs in the environmental, healthcare and advocacy sectors. Alongside his job, Mike is also a contributing writer to 'BioNews' (an online health news platform) where he has the opportunity to write about his experience living with PH and connect with others. He emphasizes the importance of 'finding something you are passionate about, that you can engage in at a level of comfort'.
Mike is a strong believer in the power of advocacy and stresses the importance of actively seeking information and connecting with your peers by engaging in support groups, either through social media or face-to-face: 'You need to go out, find information, chat with people, join a Facebook group, connect with people who are going through this'. Although it might seem scary to put yourself out there, Mike urges people to always 'encourage hope and reach out' because 'hope comes from storytelling'. Mike's diagnosis with PH motivated him to figure out what he really wants to do. While PH might have closed a door, it has certainly opened a few windows.
COMPETITIVE PAINTBALLER AND WILDLIFE ENTHUSIAST
"TALK TO YOUR PEERS, LEARN FROM THEM AND PREPARE FOR WHAT TO EXPECT. SOCIAL MEDIA OFFERS A VIBRANT NETWORK OF PEOPLE, INFORMATION AND RESOURCES THAT CAN BE HARNESSED IN THE BEST WAYS POSSIBLE TO HELP YOU FIND SUPPORT."
- JUSTIN'S STORY
As a teenager growing up in Pennsylvania, Justin was incredibly active; he played lacrosse, took part in competitive paintballing and enjoyed the outdoors with his family. However, he found that he would tire quicker than his twin brother and his friends, and at the age of 14 he passed out whilst paintballing. After being rushed to hospital Justin was diagnosed with primary pulmonary hypertension (PH).
Three years post diagnosis, Justin lived a relatively healthy life, until he had a wisdom tooth removed and reacted badly to the anaesthetic, sending his body into shock. This left Justin barely able to walk and reliant on a wheelchair for the next six months. Due to this sudden debilitation, Justin was moved to the top of the transplant list, and at the age of 17 he underwent a double lung transplant.
During the years in which Justin lived with PH, he found solace and distraction in both reading and being outdoors. He says that 'reading is perfect as you don't need to be in perfect health to lose yourself in a book'. Outdoor pursuits kept him close to his brother and father, and gave him a sense of normality, walking through the forests of his hometown. Both activities gave, and still give him a sense of escapism, and they were able to take him away from focussing too much on his illness.
Justin stresses the importance of learning from peers, stating that people should 'talk to their peers, learn from them, and prepare for what to expect. Social media is a giant platform of information and resources that can be utilized in the best ways possible to help people find support.'
CAR DEALER, DOG LOVER AND PH ADVOCATE
"PH MAY CHANGE YOUR SCHEDULE, BUT IT DOESN'T CHANGE WHO YOU ARE. KEEP YOUR MIND SET ON YOUR GOALS, AS A GLIMMER OF POSITIVITY CAN IMPROVE YOUR DAY, YOUR MONTH, EVEN YOUR YEAR."
- LANE'S STORY
Until diagnosis in May 2013, Lane had been asymptomatic; therefore being told that he had pulmonary hypertension (PH) at the age of 24 was a total shock to him and his family. Since then he has 'grabbed PH by the horns', and from the beginning he has taken management of his condition seriously and refused to let PH affect the way he lives.
Lane works at a successful car dealership in South Carolina, and says that although the job can be tiring, as it often requires long hours and weekend shifts, he loves it and wants to work there as long as he can. Lane has disclosed his PH diagnosis with all of his colleagues and although it might not be for everyone, he believes telling his colleagues has been hugely helpful. Lane says because his colleagues know he lives with PH, they understand when he needs to rest and can support and motivate him throughout each day.
Lane is also part of an all men's Facebook group called the Men's PHight Club, which was set up by a PH patient as a private space for men to share their feelings and experiences of living with PH. The group is very active, sharing interesting stories and jokes, whilst supporting each other to live well with PH.
Lane believes that his biggest accomplishment won't be how much money he has made or how far he gets in his job, but instead how well he has handled his diagnosis and managed to support others living with PH. He believes that 'PH may change your schedule, but it doesn't change who you are. Keep your mind set on your goals, as a glimmer of positivity can improve your day, your month, even your year'.
NOVELIST, FOUNDER AND PRESIDENT OF PH SUPPORT GROUP IN SERBIA
BOARD MEMBER – PRESIDENT OF PHA EUROPE
"WHEN I WAS YOUNGER I STRUGGLED WITH MY PH DIAGNOSIS AND DIDN’T LIKE BEING DIFFERENT TO EVERYONE ELSE. BUT THERE HAS BEEN A SILVER LINING AND AS PRESIDENT OF PH SERBIA, I’VE FOUND MY PURPOSE IN HELPING OTHERS WHO ARE GOING THROUGH A SIMILAR JOURNEY."
- DANIJELA'S STORY
Since birth, Danijela had difficulties breathing and her medical team recognized that she had a problem with her heart. At the age of two she was diagnosed with pulmonary hypertension (PH). Due to a lack of healthcare options in Serbia at the time, she travelled to London with her family for treatment. Growing up with a condition like PH was very difficult for Danijela, she says "I didn’t understand as a child why I was so out of breath and too exhausted to keep up with my friends. Climbing the stairs at school felt like climbing Kilimanjaro and teachers looked at me as though I was lazy". As treatment improved over the years, she has been able to better manage living with PH.
Now aged 43, Danijela uses her experiences of living with PH to help children on similar journeys. Danijela understands the importance of being educated on what the condition is, not only for those diagnosed but for people around them, describing PH as "an invisible illness that’s hard to explain". As the President of the patient support group PH Serbia, she works tirelessly on disease awareness programs, such as supporting people living with PH to write explanatory letters and visiting colleges to talk to teachers and students to improve education and awareness around PH.
Danijela is a keen writer and has published five novels in Serbia, including a children’s story, which is aimed at young people who feel different from their peers, who may have a rare disease or other condition. As PH Serbia’s President, and now President of PHA Europe, she has a platform to advocate for people living with PH and the need for further research. Danijela describes the most important thing that she has learnt; "in the beginning I tried to ignore my PH to fit in with my friends, but I have learnt that it is okay to ask for help and this is important to enable others to understand what it is like to live with a condition like PH."
SINGER, SONGWRITER AND PERFORMER
"WHEN I SING I FEEL LESS OUT OF BREATH, IN THOSE MOMENTS PH DOESN’T EXIST FOR ME"
- CHLOE'S STORY
In 2013 Chloe, a singer and performer, was diagnosed with pulmonary hypertension (PH) at the age of 30. Five years prior to her diagnosis, Chloe says she had become increasingly short of breath and experienced regular episodes of coughing, particularly whilst singing; "performing became so difficult, taking three steps onto the stage felt like climbing Everest!", says Chloe. One day Chloe developed sudden, severe swelling of her ankles and abdomen, which led to her diagnosis of a rare form of PH, called pulmonary venoocclusive disease (PVOD).
As well as following advice from her specialised healthcare team regarding management of her PH, Chloe also prioritises self-management of the condition and looks for changes that she can make to improve her health. She developed five key principles that she followed post-diagnosis, that she still lives by today: nutrition, mindset, exercise, family and friends and creative expression. Chloe says, "sticking to these principles guides my life and improves my health".
Chloe has continued her singing career, accompanied on stage by her oxygen tank and says "when I sing I feel less out of breath, in those moments PH doesn’t exist for me". She dedicates many of her self-written songs to raising awareness of PH and has performed her recent single ‘Smile’ in six hospitals, inspiring children and patients with similar diagnoses. She also enjoys vlogging to share her PH story, saying "I want people to know they are not alone on this journey".
Chloe advises anyone recently diagnosed with PH to "surround yourself with positive stories, see each small improvement as a goal reached and work hard on your mind, body and spirit. Just like an athlete you have to look after yourself".
CLINICAL NURSE CONSULTANT AND WORLDWIDE TRAVELLER
"TRY TO FIND WAYS TO LIVE WITH PH WHILE WORKING TOWARDS YOUR GOALS – SETTING TARGETS AND CREATING A PLAN CAN HELP!"
- TEGAN'S STORY
Tegan was initially diagnosed with epilepsy after a series of fainting episodes, which started when she was just five years old. A year later, doctors discovered that her heart was larger than normal after she developed a bad chest infection, and just a few days later she was diagnosed with the rare condition, pulmonary hypertension (PH). This was a huge shock to Tegan’s family who were delivered the devastating news that she would probably not live past 10 years old. When she reached the age of 10 she was placed on the heart and lung transplant list and started treatment immediately. Remarkably this dramatically improved her symptoms, overall health and quality of life. She was able to come off oxygen, was removed from the transplant list and returned to school just six months later.
Now age 29, Tegan’s PH remains well controlled and she works as a clinical nurse consultant in both paediatric and haematological cancers, which she finds incredibly rewarding. She has adapted her life to live with PH, which has enabled her to achieve more than she ever thought possible: "I never thought I would own my own house and now I do".
She loves to travel and completed a solo trip around Europe visiting an impressive 19 countries in 91 days. "I barely packed any clothes as a three-month supply of treatment took up two entire suitcases". She blogged about her trip which reached the online PH community and led to her speaking at the World Congress of Cardiology and Cardiac Surgery in Barcelona in 2017, and in 2019 she represented the Pulmonary Hypertension Network Australia.
Tegan says she now "lives life to the fullest" and has strong relationships with loved ones who have supported her throughout her journey. She is looking forward to her 30th birthday plans and to continue her travels.
PRINCE EDWARD ISLAND, CANADA
PH PATIENT ADVOCATE
"I’M ON A MISSION TO SPREAD AWARENESS – TO THOSE LIVING WITH PH AND TO OTHER YOUNG PEOPLE…I FEEL GREAT JOY IN HELPING OTHERS AND CONTRIBUTING TO THE PH COMMUNITY"
- JENNIFER'S STORY
Pregnancy should be an exciting time for every new mother, however, Jennifer found her experience became complicated by some alarming symptoms, which would eventually lead to a diagnosis of pulmonary hypertension (PH). Along with more typical signs of pregnancy, such as swollen feet and hands and shortness of breath, Jennifer describes "gasping for air" when lying down. She had to be airlifted to a larger hospital in Nova Scotia for the safe delivery of her daughter. Jennifer would go on to spend a further two months in hospital post-delivery and had to overcome many further complications due to her PH diagnosis, as well as all the challenges that come with being a new mother.
Life from this point changed dramatically for Jennifer, who confirms that PH has affected "almost every area" of her life, adding that she is aware of her condition "in every moment of daily living" – from the little things, like being able to raise your arms in the shower and making a bed, through to having to give up her job in a hospital. Happily, as mother to a very sociable seven-year-old, Jennifer has found other activities to keep her motivated, including managing her daughter’s Girl Guide group. Spending more time at home has also allowed her to begin fostering new-born kittens. She adds "if I’m unable to work then I can contribute and feel great joy in helping others".
Support groups have provided an important outlet for Jennifer, who would advise others living with PH to seek in-person support rather than relying on the internet for answers. She urges "don’t believe everything you read on the internet" adding that "support groups may not be for everybody but there’s nothing that can replace face-to-face contact with people going through the same things you are".
As someone with an ‘invisible’ illness, one of the greatest challenges Jennifer has faced since her diagnosis has been a lack of understanding from others. "I don’t look sick" she reflects, adding that it took three to four years for her to come to terms with people’s lack of understanding regarding her condition. She has now made it her goal to advocate for others living with PH and make a positive contribution to the PH community, starting with educating people about PH. "I’m on a mission to spread awareness" she states, adding that in order to be truly effective this needs to go beyond those directly affected by PH, extending to young people in general.
Despite the challenges she has faced, Jennifer remains positive and thankful, stating. "Living with PH might not be how you envisioned your life, I count myself as lucky and am striving to show that anything is possible".
UNIVERSITY STUDENT AND AUTHOR
"I HAVE ALWAYS LOVED EXPRESSING MYSELF THROUGH WORDS. LIVING WITH PH LED TO ME WRITING MY FIRST BOOK, ONE OF MY BIGGEST ACHIEVEMENTS TO DATE"
- MALEEN'S STORY
As a newborn Maleen, now 24, had difficulty with her breathing and spent time in an intensive care unit. She says her mum noticed her gasping for air when trying to feed and that she seemed more exhausted than a baby should; "my mother’s instinct was spot on, she knew something wasn’t right". Maleen saw multiple doctors before she was eventually diagnosed with pulmonary hypertension (PH) at age four.
Unfortunately, at that time, there were limited treatment options available in Vienna, Austria so Maleen’s family looked further afield and took the necessary measures. Maleen regularly visited New York in the US for treatment and was home-schooled to accommodate the travel and reduce the risk of infection. After learning that warmer climates improved her symptoms, Maleen’s family made another life-altering decision and began spending half the year in Florida.
Maleen’s symptoms improved with treatment and she was eventually able to live in Vienna full time. Since then, Maleen has completed a bachelor’s degree in media communications and at the age of 18, used her knowledge and experience to publish her own book. She detailed her experiences of living with PH in the hope of inspiring others, to raise awareness and provide support to those going through a similar journey. She now plans to complete a master’s in literature and creative writing to pursue her interest further.
Maleen enjoys a range of creative activities, such as singing and painting and also practices breathing exercises, which she finds to be greatly beneficial to her health. She is passionate about raising awareness of PH in as many ways as possible and since moving back to Austria her and her family have made a tremendous contribution to raising awareness and funds. This has led to the opening of PH specialist centres, allowing patients to access much needed treatment locally.
Maleen says, "if just one person hears my story, recognizes they might have PH symptoms and this leads to an earlier diagnosis, this is the reason I raise awareness".
NEW MEXICO, UNITED STATES
BUSINESS-OWNER, ARTIST AND BLOGGER
"HAVING HOBBIES IS IMPORTANT FOR YOUR MENTAL HEALTH WHETHER LIVING WITH PH OR NOT. LET GO OF SOCIAL EXPECTATIONS AND PURSUE SOMETHING THAT MAKES YOU HAPPY"
- HALEY'S STORY
Throughout junior school, Haley was a competitive dancer but as time progressed she started to struggle with sporting activities as she experienced shortness of breath. By the time she graduated from secondary school seven years later, Haley was having difficulty climbing stairs and walking long distances. She describes going shopping for her graduation outfit and collapsing, "when I told my dad I couldn’t go to my graduation because I wouldn’t be able to walk across the stage, he realized this was more than just asthma". Haley was diagnosed with pulmonary hypertension (PH) two months later, just after her 18th birthday in 2010. Understandably, this news was difficult to come to terms with and initially Haley felt angry and was in denial. She says this affected her treatment adherence as well as her mental health.
Haley says her life turned around when she moved to New Mexico and attended a specialist PH clinic. She explains how the wonderful staff there took the time to explain the disease and offered more holistic care; "the clinic offers everyone a support worker and counselling as they understand the impact that living with PH can have on all aspects of your health". Haley was diagnosed with post-traumatic stress disorder (PTSD) which was linked to her PH diagnosis. This helped her understand why she was feeling angry and she says made all the difference to her recovery. "They looked at every part of the puzzle and gave me an insight into how my brain was responding. Mental health is not an accessory to healthcare – it dominates your healthcare", says Haley.
Haley’s PH is now well controlled and she has owned her own business selling flowers and artisanal clothing. She also works with students part-time and is a keen artist. She looks forward to starting a Community Health Worker programme at the University of New Mexico where she will work with patients to help improve their care and health equality. In her spare time she writes a blog on living with PH, sharing advice and tips with others living with the condition.
Haley says living with PH meant she adapted her aspirations and now she sees ‘success’ as much broader than achieving a high-powered career. She says it’s important to have hobbies and take time for yourself; "Let go of social expectations, choose something that makes you happy and enables you to focus on your health".
"A PH DIAGNOSIS DOESN’T ALWAYS MEAN YOU HAVE TO STOP SCHOOL OR UNIVERSITY. MANAGING YOUR HEALTH COUPLED WITH POSITIVITY AND PERSEVERANCE CAN HELP YOU OVERCOME OBSTACLES AND ACHIEVE EDUCATION GOALS"
- MARIANJE'S STORY
Up until the summer of 2018, Marianje played a lot of sport and although she often felt breathless, she thought it was due to her fitness level and not anything serious. As she got older, she began noticing more pronounced symptoms and found that she had severe chest pain when exercising and would regularly pass out after playing sport. Despite having several tests in 2017, including an echocardiogram, she was not diagnosed as the doctors thought she was too young to have a serious condition. It wasn’t until she admitted herself to hospital a year later with severe symptoms, where she was tested again and diagnosed with pulmonary hypertension (PH).
Marianje has found that living with PH has sometimes affected her relationships with friends and family. Being a young person living with PH, she felt embarrassed that she was unable to walk very far and chose to keep her diagnosis private to avoid questions. Living with PH has also impacted her schooling as she has sometimes missed lessons due to poor health. Since disclosing her diagnosis to her friends and family, Marianje has seen significant benefits, for example, her friends now know to help her catch up with school if she has missed classes.
Marianje is looking forward to graduating from university with a degree in economics and says "it is important to be positive and not to stop at the first obstacle". Outside of school, Marianje enjoys swimming and hiking and says her future hope is to see further innovation in PH treatment to improve the lives of those living with the condition.
DEVELOPMENTAL AID WORKER
"BEING PART OF A PULMONARY HYPERTENSION ADVOCACY GROUP IS GREAT, YOU SHARE EXPERIENCES AND FEEL SUPPORTED BY OTHERS LIVING WITH PH. IT HELPS YOU GET SOME OF YOUR QUALITY OF LIFE BACK."
- DANIELA'S STORY
While living abroad in Ecuador, Daniela often felt short of breath and believed this was due to the high altitude. She became concerned when she moved to Peru to sea-level and saw no improvements in her symptoms. After her return to Germany, Daniela collapsed and became determined to understand the cause behind her shortness of breath. Over the following six years, Daniela’s medical team attributed her symptoms to an incorrect breathing technique. By coincidence, Daniela was diagnosed with pulmonary hypertension (PH) in 2012, almost seven years after the first symptoms occurred.
Following her diagnosis, Daniela focused on her health and recovery. This meant she could no longer travel as she used to and was unable to accept an offer for her dream job in the Caribbean, which was a huge disappointment. However, Daniela refused to let her PH diagnosis stop her from reaching her goals and found ways to adjust to her new circumstances. Through medical treatment and lifestyle changes, Daniela managed her symptoms successfully and was able to get a job in developmental aid; something she has always wanted to do.
Taking a rehabilitation course on self-management has allowed Daniela to maintain an active lifestyle, and she enjoys swimming and cycling in her spare time, as well as looking after her two family cats. Every day is precious to Daniela, but maintaining balance in her life is key: "work, leisure activities and family take up much of my time, so I leave a day every week to rest and allow my body to recover."
Even before her PH diagnosis, Daniela never dreamed that she would be where she is now - both in work and in life. The key to this for Daniela has been taking ownership of managing her condition, which for her has involved participation in patient groups and talking to others with PH about her symptoms. Daniela says, "Being part of a PH advocacy group is great, you share experiences and feel supported by others living with PH. It helps you get some of your quality of life back."
RETIRED FUNERAL DIRECTOR
"LIVING WITH PH YOU HAVE TO ADJUST AND ENJOY YOUR LIFE FOR WHAT IT IS."
- JOHN'S STORY
John has always lived an active life; living and working in Brisbane, he spent much of his life working as a funeral director, riding motorcycles and restoring classic cars in his spare time. Three years ago, these everyday activities started to feel harder and harder, as John began feeling breathless and fatigued whilst doing things that he had been doing for many years. He saw a doctor because, in his own words: "I began to feel old."
After over a year and a half of medical tests, John was eventually diagnosed with idiopathic pulmonary arterial hypertension (PAH). The diagnosis made John feel worried and uncertain about his health and this was made worse by the amount of negative and unhelpful information he found online.
Despite this, John tried hard to maintain a positive mindset and began to educate himself about PAH, which gave him the power to not only help himself but also many others. Later this year, John will attend a local PH education day where he hopes to use this as an opportunity to learn more about his own condition and strategies to help other people living with PH.
As well as learning about PH, John has adjusted his lifestyle and hobbies to allow him to continue enjoying his life; where he previously held a pilot’s license and flew planes, he now flies remote controlled planes. He still enjoys the outdoor lifestyle that he grew up with and continues riding motorcycles and bushwalking in his spare time. John says, "Living with PH you have to adjust and enjoy your life for what it is."