My daughter has Ehlers Danlos Syndrome

My daughter has been recently diagnosed with Ehlers Danlos Syndrome causing Intestinal Motility disorders, Chronic Migraine, Non Epileptic Attack Disorder triggered by flashing lights and now Mast Cell Degranulation after a catastrophic chain of events following a misdiagnosed burst appendix 4 years ago.

We have to wait months for appointments and our care plan is very poor and our consultant who we met through our private care plan with AXA due to the lack of care we were already receiving on the NHS said her condition is too complex and took us back into the NHS where we are back to square one waiting months for appointments. Are complex cases referred back to the NHS?

5 June 2014

I am sorry to hear about the problems both you and your daughter have been going through. Clearly this has been a difficult time for both of you. Ehlers Danlos syndrome is still moderately rare and is recognised as a complex condition dependant on which genes are at fault. I’m sure you know that this is a disease thought to be hereditary primarily of connective tissue and can affect any part of the body.

To answer your question, complex cases can be and are referred back to the NHS where necessary, this is because with conditions such as these you may need access to a team of specialists, nurses and therapists often within a dedicated unit containing all of these which is dedicated to the care, management and support of both the patient such as your daughter and yourself her carer and parent. These units for example have clinicians with a specific interest and expertise in certain conditions in your case it would be Ehlers Danlos syndrome and often lead the way with research and clinical excellence in their areas. They are not available within the private sector usually as The NHS is the body where funding and research into best practice genetics etc and treatments can take place so it is often helpful to be given access to such facilities along with the clinicians and therapists who are experienced pro active and able to help.

You probably know for this condition it would be a Rheumatology specialist that would lead your daughters care. There is in fact a dedicated team and also a highly experienced consultant based at one of the private London hospitals although without more information this may or may not be appropriate.

I do hope this allays your concerns somewhat, please talk it all over with your gp, the NHS should be able to meet your daughter’s needs. In addition if you would like more information about facilities and/or specialists in London or anywhere else in the UK please feel free to contact us here at axa-ppp health at hand either by phone or email where we will be happy to help you. There is also a national support organisation Ehlers-Danlos which you may find useful as well.

I wish you and your daughter the very best.

Answered by Health at Hand nurses.


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