Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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deleted_user 01/07/2009

My daughter has had 6 ear infections in the last 5 months They want her to see a ENT to get tubes ASAP am very scared to do it cause i worry about Bleeding in the Surgery.. Has anyway had to get them or have advice what I should do... PLEASE HELP...

deleted_user 01/12/2009

Professor Rodney Grahame is the leading specialist in the UK. He works at Univerity College Hospital in London. He diagnosed my EDS type 3.

Hypermobility Clinic
UCL Hospitals
40-50 Tottenham Street
London
W1T 4WT

UCLH
Secretary Leah
Leah.antunovic@uclh.nhs.uk
0207 380 9281

deleted_user 08/31/2009

I have 3 now young Adults with EDS type 3, two of these as children had tubes inserted in there ears with no issues at all. The surgeon was advised that there was a bleeding issue and he did what he had to. 1 child had the tubes inserted 3 times with no long term damage or scarring. Hope this helps.

deleted_user 09/02/2009

This is quick, easy and huge relief for her. Do it.

In regard her airway, ask them NOT to hyperextend her neck and use flexible intubabation if tube is necessary.

deleted_user 09/26/2009

I am 14 and I have EDS...I had tubes in my ears when i was little and everything was fine...hope everything goes well...

deleted_user 09/27/2009

My son a;so had 3 sets of tubes in his ears and he did well - it was necessary so the benefits outweigh the dangers. Just make sure the Anastesiologist is aware and they are careful with that! Good luck!

Heather-Ashley 04/19/2010

i had tubes in my ears when i was a baby and (as far as I know) I had no complications, and this was even before I knew about my EDS. I would say that it is a pretty safe procedure (even for people with eds) and it is definitely worth getting the tubes in her ears, because ear infections are no fun.

deleted_user 04/21/2010

Tubes are great!

Few minutes anesthesia and they slip into canal, no big deal but big benefits.

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