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.

216 Members
437 Posts
0 Online
Skin & Hair
/ Ehlers-Danlos Syndrome Support Group

My Daughter has EDS She needs Tubes in here ears.

deleted_user
deleted_user
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
deleted_user
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
deleted_user
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
deleted_user
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
deleted_user
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
deleted_user
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
Heather-Ashley
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
deleted_user
Tubes are great!

Few minutes anesthesia and they slip into canal, no big deal but big benefits.
Posts You May Be Interested In
  • Ilovethekitties

    OT My last day with USPS will be 2-27-15

    Posted by: Ilovethekitties
    Last Reply: GiphyOlivia
    21
    I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
  • Rizen

    Walk a Day

    Posted by: Rizen
    Last Reply: Secouya
    2735
    I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...