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 The North West London Hospitals Trust and at Sheffield Children’s Hospital.
What is Ehlers-Danlos Syndrome?
EDS is a group of inherited conditions which affects the skin and can affect joints, blood vessels and hollow organs (organs that have a tube or pouch i.e. the stomach or intestine).
In its mildest form the only symptoms are hypermobile (flexible) joints, but in the more severe forms it can be disabling or even life threatening. EDS is caused by various genetic defects of connective tissue and often runs in families.
Description of service
We aim to provide excellent holistic care for all adults and children with EDS. The first step is accurate diagnosis and we strive to incorporate new diagnostic techniques and developments in our practice.
Once you have been referred to the clinic you will be telephoned by 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 held on Tuesday mornings and we see adults on Wednesday mornings.
Locations
Northwick Park and St Mark's Hospitals
Adult outpatient clinics are held on level 8 of St Mark's Hospital.
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 9am-4.30pm
Consultants and other key staff
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