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Ehlers-Danlos Support UK
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New to the group :)

Very long story short I have hypermobilty but my doctors have never done anything about it! I had a tonsillectomy in march had a lot of problems during surgery which resulted in me before referred to the haematologist a few weeks later, he instantly picked up on my hypermobility and also said he knows I have EDS so now being referred to Sheffield! My question is does anyone suffer with all of the above but also have femoral anteversion? My consultant isn't willing to operate as he thinks I'm to young so just looking for advice on how anyone controls the pain and what equipment they use to help? Thank you :)

1 Reply

Hi. I just wanted to welcome you 🙂.. I am sorry to hear you have suffered, but glad your symptoms and signs have been recognised for you to get referred to a specialist. I hope that you get a diagnosis by a specialist in hypermobility, EDS and then management and any treatment interventions can be given to you..

My son and I have both finally been diagnosed with hypermobility EDS -hEDS- and are in the stages of having further tests for other body systems, and I am awaiting splints...Knowing about the condition helps you manage it, and safeguard against the potential implications of things, one being during surgery - anaesthetics, stitches, excessive bleeding- etc. Also as EDS can affect any body system, including the heart. Echocardiograms needs to be done... Years before my sons EDS diagnosis, he had a tonsillectomy. He bled excessively after.He also suffered complication from the anaesthetic. He had been ill prior to this, and later diagnosed with Myalgic encephalomyelitis -ME-.Doctors understood as little about that then, as they do EDS now 😕 .But having the knowledge yourself means you can educate all those involved in your care...My son is due to have jaw surgery, and with the EDS diagnosis and our knowledge of ME and anaesthetic's, we have been able to advise the surgical team..Management is different for everyone, and you will find what works for you. Look on HMSA and EDSuk websites..I use hot and cold bottles/packs/sprays. Prescribed meds. Actipatch from Boots. Mindfulness, meditation.Only strapping my ankles helps a bit but isn't ideal.It is a learning process..Good luck and best wishes 🙂 xx


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