A paediatric nurse who suffers from Behçets Disease is today hosting a conference for health professionals to raise awareness of her condition.
Rachael Humphries, 35, from Caerphilly, has suffered with the condition that affects just 25 people in Wales and 1,000 across the UK, for 13 years.
Because of its wide-ranging symptoms, Behçets is difficult to diagnose while there is no definitive test for it and the disease cannot be cured.
Patients are given medication but symptoms still occur every so often in a series of attacks, or flare-ups, throughout the patient’s life.
Ms Humphries organised the Behçets in a Day conference following the launch of the Welsh Government’s Strategy for Rare Diseases, which recognises that patients with rare diseases need specialist care, support and treatment.
Ms Humphries said: “There is a lack of specialist care in Wales which is a real cause for concern.
“Many patients, like me, struggle for a number of years, living with severe symptoms and it can take a long time to be diagnosed.
“With the right knowledge among healthcare professionals, doctors would be able to diagnose the condition earlier and refer patients to a specialist centre and be treated by a specialist team.”