To mark World Pulmonary Hypertension Day on 5 May, we wanted to highlight the real-life impact of the condition on patients’ quality of life. Our Pulmonary Hypertension Patient Advisory Group (PAG) shared their experiences and the importance of advocacy in promoting healthcare change.
On World Pulmonary Hypertension Day, ELF gave patients a platform to share their insights on living with pulmonary hypertension (PH) and their experiences of advocating for the condition.
World PH Day is a global event organised by PHA Europe. It aims to highlight the challenges patients face in getting an accurate diagnosis. This year, people living with the condition from around the world shared their insights on living with the condition.
ELF is proud to stand alongside people living with PH and we are committed to raising awareness of the condition. We asked members of our Pulmonary Hypertension Patient Advisory Group (PAG) to share their insights on what it is like to live with the condition and why it is important for patients to have a platform to share their experiences and work towards better care.
To better understand the challenges and experiences of those living with rare lung conditions, we asked our PAG members to share their reality of living with a rare disease. Their insights offer a deeper understanding of the daily struggles, emotional impact and patient journey.
Living with pulmonary hypertension is like carrying an invisible weight. It affects your energy, your breathing and your independence. Activities that others might find simple, such as climbing the stairs or walking short distances can be exhausting. It is a daily balance between managing symptoms, medication and trying to live as normally as possible.
Dealing with this disease is difficult, especially when you live in a country that still has no national programme to address the needs of patients. Most people living with pulmonary hypertension do not have access to the right treatment or medications.
In addition, we and our family members are using large amounts of our energy just trying to survive. This makes living with pulmonary hypertension and dealing with its challenges even harder.
Living with pulmonary hypertension turns simple tasks into battles. As a new mother in my early thirties, I struggled to care for my baby and feared not seeing her grow up. Climbing stairs or picking up objects left me breathless with a racing heart.
As my condition worsened, these tasks became harder. The emotional toll matched the physical one and the constant fear was worsened by side effects of my medication and having to travel frequently for the care I needed. All people living with pulmonary hypertension must learn how to balance their symptoms and mental health as they adapt to an ever-changing "new normal".
My condition is like carrying a heavy but invisible weight. Every step, every staircase, even a simple conversation can cause breathlessness, exhaustion and a sense of helplessness.
Many of us wait for years to receive a proper diagnosis because the symptoms are often mistaken for other conditions like asthma or anxiety. That is why raising awareness of pulmonary hypertension is crucial as this allows healthcare professionals and the public to recognise the symptoms early. This can improve quality of life.
By speaking about their condition, patients can help improve understanding and empower others with the disease to get involved in advocacy. They also highlight how joining a PAG can help amplify the patient voice.
Many people, including healthcare providers, still do not recognise the symptoms of pulmonary hypertension. This can delay diagnosis and treatment.
By raising awareness, we can contribute to better understanding and care for the condition. As a member of the ELF Pulmonary Hypertension Patient Advisory Group (PAG), I can use my voice to help shape research, education and policy, and ensure the patient perspective is listened to.
It is important to remember that you are the same person as you were before the diagnosis. This is something I try to live by.
Being a member of the ELF Pulmonary Hypertension PAG and my involvement with other organisations such as PH Austria and PHA Europe helps me to accept the disease and support others.
The country I live in is largely unaware of what pulmonary hypertension is and the challenges patients face. We must address this situation urgently and raising awareness is one way to initiate this change.
By educating the public about what this disease is, it might help some people to recognise their symptoms and seek timely support. In addition, it can have a major impact on improving access to treatments and reduce their cost.
Raising awareness of pulmonary hypertension is vital because this condition is often not diagnosed until the later stages. This can make treating the condition more complicated. Better education can lead to earlier recognition of symptoms, faster referrals and better health outcomes.
World PH Day plays a crucial role by amplifying patient voices and pushing for policy changes. Its global approach gives visibility to this rare disease that might otherwise remain in the shadows. By getting involved in a PAG, patients can contribute to important discussions on research priorities, diagnosis, treatment and care standards for people affected by this condition.
By learning from each other’s experiences, we can help to support one another and drive positive changes for lung health. Let us continue to make sure lung patients across Europe can get the care they need, when they need it.
If you are living with PH and interested in contributing to better lung health, learn more about our Pulmonary Hypertension Patient Advisory Groups (PAG) and how to get involved.
Find out more
