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Careers and hobbies

Insights gathered from conversations with young adults living with pulmonary arterial hypertension (PAH) around the globe have shown us that many fear that their career options and choice of leisure activities will be limited after their diagnosis.

In fact, there is an enormous variety of rewarding career paths and exciting hobbies that young adults living with PAH can safely pursue with the guidance of their healthcare teams and good management of the condition.

Here is just a small selection for inspiration…

Amina, 22

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.'

Liv, 17

Switzerland,
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.'

Andjela, 21

Serbia,
Trainee physiotherapist
"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.'

Catarina, 24

Portugal,
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.'

Irena, 33

Bulgaria,
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.'

Jana, 27

Czech Republic,
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.

MELINDA, 26

Hungary,
Qualified dietician
"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.'

NADIYA, 26

Ukraine,
Embroidery Enthusiast
"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.

Pere, 37

Spain,
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'.

Mike, 35

USA,
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.

Kevin, 34

USA,
Actor, director and theatre enthusiast
"PH has a way of showing you talents and mindsets that you may have forgotten. I've lobbied for PH, spoken to national organizations and started my own company. PH will affect you in negative ways, but in so many positive ways too."
Kevin'S story

On a business trip to California in 2013, Kevin was rushed to hospital after passing out. He was quickly flown back to his home state of Ohio and was diagnosed with pulmonary hypertension. At the time he says it was difficult, especially as it destroyed his career; he could no longer work as an active photographer.

However, Kevin believes that 'from the ashes all shall rise again' and his diagnosis gave him the opportunity to take a step back and reinvent himself. Having studied theatre when he was younger meant that he was well-equipped to redirect his energy into helping to build the Marietta Summer Theatre Festival; a local theatre group founded to encourage the arts locally, and provide accessible and entertaining theatre free-of-charge to the community.

Having grown up as an avid dirt car racer, Kevin's competitiveness and love for racing could not be stemmed even after diagnosis. He now practices simulated racing along with a team of other racers, and uses the platform to raise awareness for PH.

Kevin now runs an entertainment company with his wife, and wants others diagnosed with PH to know that although PH can raise the difficulty of life up a level, 'it has a strange way of showing you talents and mindsets that you may have forgotten. Diagnosis expanded my world: I've lobbied for PH on Capitol Hill, spoken to national organizations and started my own company. Of course PH will affect you in negative ways, but in so many positive ways too'.

Justin, 30

USA,
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.'

Lane, 30

USA,
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'.