"My wife has Ehlers Danlos syndrome"

About: Blaydon Primary Care Centre The Royal Victoria Infirmary / General surgery

(as a carer),

My Wife has been left to suffer in severe pain due to no specialists in our area dealing with her condition.

The GP is doing her best but is limited, most of the time they don't know where to sent her for care. She gets passed about and gets no further forward.

My wife has been to A & E at least ten times this year. She is now at the point of suicide.

I feel that the NHS is failing its duty of care to most EDS patients as this seems to be a common problem.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from The Royal Victoria Infirmary

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.

  • {{helpful}} of {{total()}} people think this response is helpful

Updates, changes and questions related to this story