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Hypermobility Syndrome and Ehler Danos Syndrome

• Message 1. 

  Posted by BrightYangThing (U14627705) on Saturday, 30th July 2011

  Anyone?
  Know about it?
  Got it?
  
  I ask because
  
  a)Bette's 'aspirin' thread on TB got me thinking - THANK YOU Bette.
  b) I am due for some essential surgery in the next couple of months and I have been instructed to list all allergies, sensitivities and the likes (of which there are many) and anything important (how do I know) for nursing/surgical team.
  c)All of a sudden, after a dangerous bout of googling, I think it is possible that a large number of seemingly unrelated niggles come together under this/these headings.
  
  Interested in advice/experiences and belief or not of the 'syndromes' . Think I may email Doc with my thoughts/concerns.
  

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• Message 2

  , in reply to message 1.

  Posted by Ell Kaye (U2222944) on Saturday, 30th July 2011

  Well having been a nurse for nearly 40 years I have to say I've never come across it, having said that I do not work in Clinics or Wards where a patient may present with the Syndrome.
  
  Being an Operating Theatre Nurse I'm interested on what type of 'essential surgery' you are having, you obviously do not have to answer that! but my nose may grow.
  
  Looking briefly at some articles & photos, I would think that pressure care during the surgery & afterwards would be advisable. It would be a good idea to ask if your hospital have a Tissue Viability Nurse, and you could come up with a care plan for your needs during your treatment & recovery.
  
  Good luck with your surgery & I wish you a successful & speedy recovery.

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• Message 3

  , in reply to message 2.

  Posted by BrightYangThing (U14627705) on Saturday, 30th July 2011

  Being an Operating Theatre Nurse I'm interested on what type of 'essential surgery' you are having, you obviously do not have to answer that! but my nose may grow. 
  
  I am always rather wary of 'syndrome's' because they seem to be by their very nature a collective of possibly or possibly not related symptoms that do not fit any other model. But........... come here..... there's more........
  
  Whisper button on.....
  
  Total Hysterectomy - to remove total uterine prolapse and repair of anterior and posterior walls. Possibly mesh, possibly not. Told minimum 6 weeks lay off - better 12 Symptoms that fit, I can cite:
  
  a Beignton score of at least 7/9 - always have
  bruise like a peach - always have
  Frequent bouts of tendinitis
  Lazy (very) eye/astigmatism
  Issues with anasthaesia in childbirth
  multiple sensitivities and allergies including adult onset asthma and eczema; aspirin, latex, opiates, lavender, skin preparations, nickel. sulphites, zantac to name a few.
  
  My OH says ' Gawd, they shoot horses don't they........... might be waste of a bullet! Love 'im I do!

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• Message 4

  , in reply to message 3.

  Posted by sheena (U1646662) on Saturday, 30th July 2011

  Ehlers-Danlos is a genetic disorder so if you have it it is extremely likely that some other members of one branch of your family will also have it ... so perhaps compare notes with siblings, cousins or the generation above or below you ?
  
  Sheena

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• Message 5

  , in reply to message 3.

  Posted by Ell Kaye (U2222944) on Saturday, 30th July 2011

  Issues with anasthaesia in childbirth
  multiple sensitivities and allergies including adult onset asthma and eczema; aspirin, latex, opiates, lavender, skin preparations, nickel. sulphites, zantac to name a few. 
  
  Adding on to your Skin requirements....
  
  I think with an allergy list like that you need a list of the stuff that you may come into contact in the Operating Theatre, after all you will be asleep & they won't be able to ask you!
  
  Could your GP arrange for skin tests &/or an extra interview with your Surgeon, Theatre Sister or Tissue Viability Nurse so they can research through the manufacturers & COSHH data....
  
  There are things like the Skin Prep..Hibitaine or Iodine based, the adhesive on the disposable drapes,(that may tear friable skin) the adhesive on the diathermy plate, (ditto) tissue staples may contain nickel , adhesive dressing etc...the latex free gloves is the easy bit!
  
  There is also an issue with post op analgesia as local anaesthetics are often given at the wound site before the end of the operation.
  
  I do hope I have not alarmed you, as far as I know most of the items these days are latex free, and the adhesives are hypo allergenic, but it really won't hurt to ask.
  
  BTW I'm in Peets (email) or on Facebook, same name, if you wish to discuss this further off board.

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• Message 6

  , in reply to message 4.

  Posted by BrightYangThing (U14627705) on Saturday, 30th July 2011

  Thanks Sheena
  
  Trying to do that but not too easy - mother very uncooperative and few others above left on either side outside her.
  
  Have asked my two brothers to review data and report back.
  
  Both of my sons have some symptoms which may point to some HMS if not EDS.
  
  

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• Message 7

  , in reply to message 5.

  Posted by BrightYangThing (U14627705) on Saturday, 30th July 2011

  I do hope I have not alarmed you, 
  
  Not at all Ell Kaye. I must admit my greatest concern in all of this is related to the spread and growth (keep finding new things) that I have hyper sensitivity to and how to get that knowledge across to the right place at the right time.
  
  I am signed onto a study of the procedures I am undergoing and had a brief call from the coordinator yesterday. Was told that the next time I see someone will be when I am admitted, 24 hours before Op. She flagged up that I should speak to surgeons secretary and get some of these issues on file well in advance, so thanks for the other heads up. 'Packing' materials and mesh are a source of concern.
  
  My GP ( a good chap) now has an online contact option so I think I will flag up these concerns to him on Monday - giving time to suggest and carry out tests or get a more up to date 'likely' problems list drawn up. Or re-assure.
  
  Thanks for the offer of contact. Don't FB but may look you up n Peets if I feel need.
  
  

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• Message 8

  , in reply to message 7.

  Posted by BaraGwenith (U14257539) on Saturday, 30th July 2011

  Sorry, don't want to be rude and jump nto your thread, but....
  
  After I had my kne replacement I developed the most awful blisters where the dressings had been attached. District nurse had to come in and dress the blisters every day, though they did heal in the end.
  
  Never knew I was allergic to the adhesive, but when I told my son, he said he was allergic too.
  
  The point I am trying to make is - tell them everything you are allergic to, they need to know.

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• Message 9

  , in reply to message 1.

  Posted by Dunlurkin NL (U2675855) on Sunday, 31st July 2011

  If you happen to bump into Mynnyddyarcher of this parish, I am pretty sure her grandchild(ren) have something like this. They are still young.
  
  
  
  Dunlurkin

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• Message 10

  , in reply to message 9.

  Posted by Dapply (U2437462) on Sunday, 31st July 2011

  I have Hypermobility Syndrome. I have dislocated my knee badly and it "pops" out every now and then. And my shoulder.
  
  My cousin and her daughter have it too. Apparently it is passed on through the female lines.

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• Message 11

  , in reply to message 10.

  Posted by Celtic Tiger (U2229153) on Sunday, 31st July 2011

  My son has this syndrome. It doesn't really bother him in everyday life except that he has to be very careful of not straining his lower back muscles. As another poster upthread mentioned it does have the advantage of dislocated joints (in my son's case his shoulder) popping back into place without medical intervention.

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• Message 12

  , in reply to message 1.

  Posted by DeeKay Bee - Disenfranchised (U236881) on Sunday, 31st July 2011

  I'm sure there have been threads in the past about this, possibly started by Myn (can't remember full name) so they may be searchable.

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• Message 13

  , in reply to message 8.

  Posted by BrightYangThing (U14627705) on Sunday, 31st July 2011

  Thanks BaraGwenith
  
  I am making a list of all actual and possible allergies ready for surgeons notes. I am almost at the point not paranoia about this, but I suppose a hospital is not a bad place to be in an undue reaction takes place.
  
  
  
  
  

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• Message 14

  , in reply to message 10.

  Posted by BrightYangThing (U14627705) on Sunday, 31st July 2011

  Interesting Dapply. Thanks.
  
  I have never had dislocations but my youngest son suffered from knee locking for years (various specialist appointments, no diagnosis) until at age 14 he had surgery to remove masses of knotted cartilage tissue removed
  
  How did criteriayou get diagnosed? I am not at all convinced that I fit the
  
  
  
  Tx Dunlurkin
  Will check out.
  

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