HHT and PAVMs

About

Our HHT and PAVMs services care for and treat patients with hereditary haemorrhagic telangiectasia (HHT, also known as Osler Weber Rendu syndrome) and/or pulmonary arteriovenous malformations (PAVMs).

Hammersmith Hospital has had a centre for specialist treatment of these conditions since 1983. The service receives over 200 referrals each year, provides one-stop clinics, and conducts on-going research. The service offers well-rounded treatment and advice about lifestyle management for people with HHT and PAVMs. 

Conditions and treatments

HHT is a genetic disorder that leads to the development of abnormal blood vessels. When present in the nose and in the gut, they may bleed. Over long periods, chronic bleeding exhausts the body’s iron stores and people with HHT may become anaemic. HHT also leads to the development of arteriovenous malformations (AVMs) such as pulmonary AVMs (PAVMs).

If PAVMs are present, blood bypasses the key blood vessels in the lungs which means blood is not processed properly, leading to low oxygen levels and other complications.

While both conditions can lead to the development of other health problems, with appropriate management, people with HHT and/or PAVMs can lead normal, healthy lives. 

Additional information

Clinical trials

Generations of people with HHT and/or PAVMs have contributed to our understanding of these important conditions. Usually, no specific extra study is required but from time to time there may be clinical trials running that you may want to join. These are discussed separately and are never compulsory.

Our recent studies have focused on nosebleeds and triggers, oxygen levels, anaemia, and preventing blood clots, strokes and other complications. Please click here for more information.

Please note that HHT and PAVMs are both approved conditions for the 100,000 Genomes Project. If this might be suitable for you, we will let you know, and give you the opportunity to take part, if you wish.

Further online resources

• NHS CHOICES: HHT
• IMPERIAL COLLEGE LONDON: HHT AND PAVMS
• THE OXYGEN TRAIN