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Ehlers Danlos Syndrome National Diagnostic Service

The national Ehlers-Danlos Syndrome diagnostic service is a specialist service for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome (EDS). The two branches of this service are based at Northwick Park and St Mark’s Hospitals in Harrow and at Sheffield Children’s Hospital. Both services are for adults and children.

Please note we are unable to accept referrals from GPs or private consultants.  We can accept referrals from NHS Consultants.  The service focuses on diagnosing complex EDS.  When the main issues are managing the day-to-day aspects of EDS it can be more useful to be referred to other specialists such as rheumatologists or paediatricians.

What is Ehlers-Danlos Syndrome?

EDS is a group of inherited conditions which can affect the skin, joints, blood vessels and hollow organs (organs that have a tube or pouch i.e. the stomach or intestine).  EDS is caused by various genetic defects of connective tissue and often runs in families.

The main types of EDS include classical, hypermobile, vascular, kyphoscoliotic, arthrochalasic and dermatosparactic EDS.  In its mildest form, symptoms can be limited to hypermobile joints but in the more severe forms it can be disabling and even life threatening.  Making the diagnosis of EDS can be difficult and this is the reason a specialist service is needed for the complex Ehlers-Danlos Syndrome.

Description of service

We aim to provide an excellent diagnostic service for adults and children with suspected complex EDS and we strive to incorporate new diagnostic techniques and developments in our practice.

When a referral is accepted by the service, we will send you a letter and arrange a telephone call from the genetic counsellor to gather information for the clinic and discuss your questions or concerns.  At the appointment you will discuss your medical history and family history with the consultant and have a physical examination. You may be offered a test such as a genetic blood test or skin biopsy. Our clinic for children is usually held on Tuesday mornings and we see adults on Mondays and Wednesdays.

Locations

Northwick Park and St Mark's Hospitals

Adult outpatient clinics are held on level 8 of St Mark's Hospital, within the N W Thames Regional Genetics Service (Kennedy Galton Centre).

Children's clinics are held in the children's outpatient unit, Chaucer unit on level 3 of Northwick Park Hospital.

Contacts

Northwick Park and St Mark's Hospitals

  • EDS Coordinator
    020 8869 3166 8.30am-4.00pm

Consultants and other key staff

View Ehlers Danlos Syndrome National Diagnostic Service consultants »