Inspiring stories of those living with PAH

Receiving a diagnosis of pulmonary arterial hypertension (PAH) can be incredibly daunting and may require you to make major changes to your life. Hearing the stories of other people that have found a way to live well with PAH can be both reassuring and inspiring.

This page includes the experiences of different people living with PAH, who share their unique perspectives on managing the condition and feeling empowered.

Practical guidance from PAH patients on being diagnosed and managing the condition

Meet Jane, Rosie, and Sandra. They all have different experiences of living with PAH. In this video we hear about their unique paths to their PAH diagnoses, and helpful recommendations on how to adapt to managing their condition.

Understanding your diagnosis journey and living with PAH

In this video we meet Simon and Olivia. They have both been diagnosed with PAH and share their diagnosis journeys and some helpful tips that have helped them better manage their condition.

Advice from PAH patients on being newly diagnosed with the condition

In this video we meet An and Sussie. They both live with PAH and share their advice for newly diagnosed patients, such as finding support from a local patient organisation and talking with other patients about living well with PAH.

How to feel empowered to communicate about living with PAH

Hear Michelle and Jane share their personal perspectives on learning how to speak about the condition, including the importance of having a strong support network around you and involving your loved ones in your conversations with your PH care team.

Sharing your PAH diagnosis with loved ones and managing the condition

Hear from Simon and Olivia on the importance of being transparent with your loved ones and your healthcare team when communicating about PAH and them reflecting on their greatest achievements while living with the condition.

The importance of physical and mental health when living with PAH

In this video, hear advice from different people living with PAH on how to maintain good physical and mental health, the importance of a healthy diet, and the power of practising meditation.

Patient perspectives on adjusting to life with PAH

Meet Nicole, Michelle, and Jane, who share their unique experiences on how they’ve adjusted their lives to live well with PAH. This includes speaking with other PH patients, learning how to ask loved ones and your care team for help, and keeping a gratitude journal.

UK, Entrepreneur

Hollie was diagnosed with PAH during the last two months of her pregnancy and immediately admitted into hospital care where she remained until the birth of her daughter. Balancing the responsibilities of being a new mother and the serious symptoms of PAH led to great anxiety and Hollie avoided any kind of activity out of fear of triggering an emergency.

Over time Hollie’s condition stabilised and she learnt not to panic when she felt breathless. Reflecting on her own experience of having a new-born, Hollie and her husband were inspired to launch their own company; organising and delivering gift boxes full of useful, innovative and practical products to new parents.

Being her own boss has given Hollie the flexibility to work from home, in her pyjamas if she wishes (!), and has been truly rewarding. As well as running her own successful company, Hollie volunteers with a group of friends who have set up a homeless charity that provides sleeping bags and thermals to those living on the streets during winter.

Hollie advises others living with PAH to find the job that is the right fit for them and their needs. ‘It’s about mentality not physicality. Don’t let PAH change the course that you want to take.’

Bosnia and Herzegovina, Student and NGO Project Manager

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 organisation (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.

Switzerland, Student, Performer and Playwright

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 it is 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 took on her greatest adventure yet: moving to Australia for one year as part of a student exchange. This was a huge milestone after being advised against all travel as a young child and one that Liv was confident to reach. 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.’

Serbia, Trainee Physiotherapist

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.’

Portugal, Personal Care Assistant

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 got 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.’

Spanish Patient Group Founding Member and Family Man

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 (PH) 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 organisation, Hipertensión Pulmonar España, of which he is a co-founder and active member. Being a member of this organisation has helped Pere ‘feel alive again’. To anyone who has been newly diagnosed with PH, Pere recommends they join a patient organisation 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’.

Bulgaria, Shop-steward and Foodie

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 realises 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.’

Czech Republic, Jet-setter and Travel Guru

Jana has lived with PAH for the past decade, after receiving a diagnosis when she became increasingly tired and struggled to walk upstairs. She was later 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.

Hungary, Qualified Dietician

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 diet 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.’