Northern Trust leads the way with NI’s first paediatric genetic heart clinic

Learning that your child has a genetic condition can be an overwhelming experience for any family.

Familial hypercholesterolaemia—an inherited disorder caused by an altered gene leading to high cholesterol—is one of the most common genetic conditions worldwide.

To support early diagnosis and specialist care, the Northern Health and Social Care Trust has launched Northern Ireland’s first dedicated paediatric clinic for the condition, which is helping to identify children at risk sooner and improve their long-term health.

FH is linked to a higher risk of very early cardiovascular disease, with as many as one in 250 people carrying the altered gene that causes the condition.

Explaining more, FH Specialist Nurse Julie Donnelly said: “We are delighted to have a specialist FH paediatric clinic for children who test positive for FH and their carers, providing support from our multidisciplinary team within a child friendly environment.

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“It is important to detect FH early, as treatment is very effective at reducing cholesterol levels and, in turn, decreasing the chance of developing cardiovascular disease.”

Babies born to a parent with FH have a one in two chance of inheriting the condition and should be tested at the earliest opportunity, ideally before their 10th birthday.

Since the introduction of the clinic, feedback from parents has been very positive:

• “I feel this clinic has really helped my son understand his health concern. The staff are extremely friendly and helpful, always answering any queries we may have.”
• “I appreciate all the support from Mrs Julie Donnelly, FH nurse, and Dr Beckett, who is always very supportive and on the ball with all tests. Even if I’m concerned and need advice, I always get professional support. I think it is brilliant that the FH clinic is on and supports families with this genetic disease—thanks very much.”
• “The Familial Hypercholesterolaemia clinic has been a great support for my son and my family since diagnosis. They have been essential in advising us on what to do for my son with his diet, lifestyle and medication.”
• “Nurse Julie Donnelly has been so helpful if we have any questions or worries about anything. She explains everything so well.”

Parents who think their child could be at risk of FH should contact their GP as early as possible to discuss next steps and any need for specialist referral.