Ehlers-Danlos Support UK
1,769 members554 posts

Diagnosis override and lack of awareness in NHS of EDS

I was diagnosed with hypermobility syndrome in 2014. I had an op on my knee in 2007. Broke my leg in 2010. Physio only look at my knee. Anyway I was doagnosed with fibro in May by another rheumatologist. The app went ok. When the letter came she dropped my diagnosis of hypermobility syndrome and said I only scored 2/9. She did not even do the Beighton score and was previously diagnosed. I am complaining to NHS. But feel as though there is no awareness and there is no support for us.

6 Replies
oldestnewest

I wonder if she was trying to apply the new more strict hEDS criteria in which case she should have given you the diagnoses of HSD.

The problem with many consultations and people generally is that all they look at is the hypermobility of the joints, they forget that the skin is really important too. In fact both Ehlers and Danlos were dermatologists!

Just because you are not as hypermobile because of your age, doesn't mean to say that you won't still have problems with your skin and all the other tissues that can be affected by EDS.

You might like to send the link to the GP EDS Toolkit to the Rheumatologist along with a letter setting out your concerns.

rcgp.org.uk/clinical-and-re...

1 like
Reply

All she did was look at my knees, prod me in ribs, back and shoulders. Said I had fibro, but the letter came and said 2/9 on beighton when she didnt even do that. She noted I have genetics too and seen my ankle go inwards. Thanks. The whole apt was strange. I went there to get support for eds. To be diagnosed with fibro, and now trying to undiagnose eds.

Reply

Did she go through a thorough examination in order to be able to diagnose fibro:

emedicine.medscape.com/arti...

Reply

No she did not do any of that. Just prodded me in said areas, and diagnosed fibro. That was it.

Reply

Sounds like you need a second opinion!

Reply

Yep, asking for that. It was a registrar too. Im going to ask all future apts to be with the consultant not an understudy. As I have had issues with them in the past.

Reply

You may also like...