"My wife has Ehlers Danlos syndrome"

Thank you for your comments about your wife’s care and the difficulties she is having living with Ehlers-Danlos Syndrome (EDS). You mention she is at the point of suicide and if this is still the case we would suggest you urgently consult your GP or attend the Emergency Department to seek help. Your concerns about the lack of specialist treatment have been discussed with a Consultant Rheumatologist who advises that EDS can be highly variable in its degree. Most people with it, particularly in the milder forms, don’t need specialist care – exercise and weight loss are the main forms of treatment. Those with more severe forms that do need specialist care are served by specialist centres which are commissioned nationally. If your wife needs a referral to a specialist centre, she should discuss this with her GP. You also mention your wife has been to the Emergency Department ten times this year but you do not say whether the service you have received from this department has been satisfactory. If you do have any thoughts about how we could improve our service please contact the Trust’s Patient Relations Department on 0191 223 1382 or the Patient Advice and Liaison Service on 0800 0320202. Finally we are sure you are aware of the available support but http://www.ehlers-danlos.org/ is the website of Ehlers-Danlos Support UK, a registered charity set up to support those living with EDS.