tag:blogger.com,1999:blog-4795778813532831447.post8504780819488677956..comments2023-10-03T14:26:14.203+01:00Comments on Life in Clarity: Tick in a boxRebecca Bradleyhttp://www.blogger.com/profile/10194524230109997420noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-4795778813532831447.post-6000644945683519792010-09-13T03:50:12.158+01:002010-09-13T03:50:12.158+01:00I think the hardest thing about EDS is that so lit...I think the hardest thing about EDS is that so little is known (relatively) that ticky boxes seems to be what they fall back on. <br /><br />Plus, unlike what doctors seem to believe, EDS can have a huge crossover between types.<br /><br />So frustrating.Veronica Foalehttps://www.blogger.com/profile/05519401661788911341noreply@blogger.comtag:blogger.com,1999:blog-4795778813532831447.post-68745643426424407222010-09-07T10:35:57.241+01:002010-09-07T10:35:57.241+01:00Yes to the gall bladder thing.
As for the top con...Yes to the gall bladder thing.<br /><br />As for the top consultant, I was not aware there were any female top consultants in EDS (at this particular time) although I know of a couple who are working at it. Also, direct from one of the top EDS consultants who's just retired from NHS work, they don't use the biopsy unless they're particularly worried about VEDS or the diagnosis is really, really unclear. Why? Biopsy is expensive and at best somewhat unreliable. <br /><br />Good practice seems to be to hold off on diagnosing very young children as plenty do grow out of their hypermobility. It's thought best to proceed on the basis that the hypermobility needs physio, possible OT etc so gets the preventative help needed during childhood without a label it's impossible to lose at a later date if it turns out to be uncomplicated childhood hypermobility. Formal diagnosis usually gets made around the age of 13 unless there are already formally diagnosed relatives. <br /><br />Im my personal, not backed up by any research opinion; boys seem to present with more hypermobile related problems in young childhood but stabilise and do better later. Whereas girls even if obviously hypermobile in early childhood tend to have less issues until puberty hits when the hormones make for much more difficult a time than the boys. That said, it's worth watching your teenage girl for such issues. <br /><br />Hope that helps! BendyGirlBenefitScroungingScumhttps://www.blogger.com/profile/08939136229593231935noreply@blogger.comtag:blogger.com,1999:blog-4795778813532831447.post-9244353231488068512010-09-04T19:28:46.394+01:002010-09-04T19:28:46.394+01:00I'm sorry this was so frustrating.
I've fo...I'm sorry this was so frustrating.<br />I've found that Doctors can have a very different attitude when trying to rule something in/out versus trying to find out what's wrong. It can be very aggravating and almost impossible to get them to shift 'modes.' <br />I don't have any advice for you. I'm just sorry that you and your son are going through this.Wacky Lisahttps://www.blogger.com/profile/13869515594850080903noreply@blogger.com