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PHA UK representatives may be available for interview by arrangement – these include frontline NHS professionals involved in PH treatment and care and patients and families affected by the condition.

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Pulmonary Hypertension – a journalist’s guide (FAQs):

What is PH?

PH is a rare lung and heart condition. It occurs when the walls of the pulmonary arteries thicken and become stiff or are blocked by blood clots, which makes it very difficult for them to expand and allow blood through to the lungs. This places far greater pressure than normal on the right side of the heart as it pumps the blood. It can cause extreme breathlessness, blackouts and heart disease.

What causes PH?

Research is still being carried out into the causes of PH. It can affect people of all ages including babies, children, pregnant mums, adults and older people.

PH is also associated with a number of other medical conditions such as:

  • portal hypertension
  • connective tissue disease, eg systemic sclerosis
  • HIV infection
  • congenital heart disease
  • sickle cell anaemia

What are the symptoms of PH?

The main symptom of PH is breathlessness. This is the symptom that people will normally notice first. Other symptoms may include chronic fatigue, dizziness, feeling faint, swelling of the feet or ankles, and chest pain (particularly during exercise).

How common is PH?

Around 8,000 people are currently diagnosed with PH in the UK, 300 of which are children. Around 400 people in the UK have Chronic Thromboembolic Pulmonary Hypertension (CTEPH).

Awareness of the condition has improved in the last 15 years, however it is still a rare condition and it is not known how many cases go undiagnosed. PH can take a long time to diagnose and is often mistaken for conditions such as asthma at first.

Can PH be cured?

There is no cure for PH. There are, however, a range of treatments to manage the chronic condition available through NHS specialist centres; and life expectancy for those with the condition is six to seven years. A double lung and heart transplant is a treatment option for many with the condition.

Patients with CTEPH may undergo a pulmonary endarterectomy, an operation to clear the pulmonary arteries of clots and scar tissue.

Where do people with PH get treated?

There are nine specialist PH centres in the UK and Ireland:

  • Freeman Hospital, Newcastle
  • Golden Jubilee National Hospital, Glasgow
  • Great Ormond Street Hospital, London
  • Hammersmith Hospital, London
  • Mater Hospital, Dublin
  • Royal Papworth Hospital, Cambridge
  • Royal Brompton Hospital, London
  • Royal Free Hospital, London
  • Royal Hallamshire Hospital, Sheffield

What is the PHA UK?

PHA UK provides information, support and advice to people with pulmonary hypertension. The charity has over 4,500 members and helps to fund thousands of pounds worth of research, health education initiatives, projects and events to promote better understanding, diagnosis and treatment of the disease and raise awareness of the condition.

The charity was set up in 2000 by a small team of volunteers – patients, family members, friends and frontline health professionals. It is now at the heart of a nationwide PH community, providing a network of mutual support, experience, high quality information and advice.

The PHA UK works alongside other charities and is a member of PHA Europe and the Heart Care Partnership – affiliated to the British Cardiovascular Society.