Hereditary Haemorrhagic Telangiectasia (HHT)

Hereditary haemorrhagic telangiectasia (HHT), also known as Osler–Weber–Rendu syndrome, is an inherited condition affecting blood vessel development. It can cause abnormal blood vessels (telangiectasias and arteriovenous malformations) in various parts of the body, including the nose, skin, lungs, liver and brain.

Symptoms

  • Recurrent nosebleeds (epistaxis) — the most common symptom
  • Red or purple spots on lips, tongue, fingers (telangiectasias)
  • Anaemia due to chronic blood loss
  • Shortness of breath (from pulmonary arteriovenous malformations)
  • Headaches or neurological symptoms (from cerebral AVMs)

Nasal Management

Nasal telangiectasias are the most common cause of nosebleeds in HHT. Prof Lubbe offers the following services for patients with HHT:

  • Comprehensive assessment of newly diagnosed HHT patients, including appropriate screening for arteriovenous malformations (AVMs), coordination of specialist referrals and facilitation of intravenous (IV) iron therapy where clinically indicated.
  • Blue laser ablation of nasal telangiectasias
  • Sclerotherapy injections for nasal telangiectasias

Multidisciplinary Approach

HHT requires coordinated multidisciplinary care. Professor Lubbe works with pulmonologists, cardiologists, neurologists and hepatologists to assess and manage arteriovenous malformations and other complications affecting different organ systems.

HHT Centres

For more information about HHT, international treatment guidelines and specialist centres, visit Cure HHT or contact the practice.

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