To ask the Minister of Health to detail the number of people in Northern Ireland currently diagnosed with Ehlers-Danlos syndromes.

Information on the number of people in Northern Ireland that are living with a diagnosis of Ehlers-Danlos syndromes (EDS) is not held centrally. Each of the five Health and Social Care Trusts (HSCTs) was, therefore, asked to provide a response.

While Belfast, Northern and Western HSCTs responded that their systems do not record the required information, the answers and other information that they provided now follow. The Southern and South Eastern HSCTs were unable to provide a response within the required time frame.

Belfast HSCT

Belfast HSCT responded that ‘Ehlers-Danlos syndromes’ is a non-specific term used for a collection of quite distinct conditions. Clinical Genetics do not keep a population register of patients with any of the various EDS conditions, but the Genetics database flags 87 people in Northern Ireland with a confirmed diagnosis. This is a mixed dataset based purely on diagnostic coding and has not been validated.

Belfast HSCT recommended the patient support group ‘Ehlers-Danlos Support UK’ (https://www.ehlers-danlos.org/) for information about this patient group.

Northern HSCT

Northern HSCT responded that prevalence in the community is estimated to be 1 in 500 by some studies, depending on the definition of EDS. Apart from rare genetic forms there are no specific diagnostic tests, and it has no way to estimate current numbers attending.

Western HSCT

Western HSCT responded that there are no waiting lists or specialties that would identify these patients easily and it does not hold an active list of patients with this condition.