=Osler-Weber-Rendu disease. Autosomal dominant with high penetrance. 

Not a problem in early life.  Usually presents with recurrent nose bleeds.  Red spots on lips, tongue and fingertips, not so obvious in young children. But potential for GI and pulmonary haemorrhage, pulmonary/liver/brain AVMs.  Migraine common.

Iron deficiency a problem, of course!

Life expectancy normal if assessed and screened for pulmonary AVMs (check sats!?).

No restrictions on physical activity unless pulmonary AVM (scuba diving)

No coagulation disorder but antiplatelet and anticoagulant medicines should only be prescribed after weighing risks and benefits.

For refractory bleeding, bevacizumab or thalidomide (anti-angiogenic drugs) can be considered.

Screening for AVMs done from age 16 (refer neurosurgery for brain AVM screening). Annual full blood count.

Beware nasogastric interventions! (Put alert on hospital records)

European guidance at www.doi.org/10.1016/j.ejmg.2021.104370