tag:blogger.com,1999:blog-34940564.post2444406312339877047..comments2023-11-25T01:12:34.326+00:00Comments on Benefit Scrounging Scum: 'Second Skin' suit gives new lease of life to toddlerBenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-34940564.post-21795782701239049472010-07-31T11:15:57.512+01:002010-07-31T11:15:57.512+01:00I *think* the suit works primarily by providing th...I *think* the suit works primarily by providing the proprioceptive feedback needed with hypermobile joints rather than actually holding any of the joints in place. If you look at the photo the suit doesn't fit snugly enough around the shoulders to be giving much support. As I understand it, it's the additional sensory input which is the more important part of the suit. <br /><br />Cheap alternatives can be used by anyone wanting to give it a go. Leggings and leotards, especially the tight dance kind give great proprioceptive feedback and the kind of performance enhancing suits that athletes and some swimmers now wear are even better, though more expensive an option than basic dance wear. It works in a similar fashion to the theraband exercise I described a few posts back. <br /><br />Hope that clears up some confusion? BG XxBenefitScroungingScumhttps://www.blogger.com/profile/08939136229593231935noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-73686031203070374902010-07-30T20:07:01.114+01:002010-07-30T20:07:01.114+01:00What an uplifting story, although, as steph said, ...What an uplifting story, although, as steph said, I am confused that the suit doesnt seem to cover her knees...? Is this a new version since they are so much stronger now?Joanna Cakehttps://www.blogger.com/profile/15944673677004607976noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-42901470156830787472010-07-30T16:09:02.001+01:002010-07-30T16:09:02.001+01:00That suit the little girl has reminds me of a figh...That suit the little girl has reminds me of a fighter pilot compression suit, which keeps everything held in so blood doesn't pool away from the brain under hi-G turns. I wonder if they'd be any good?Sciamachyhttps://www.blogger.com/profile/16153456572414113536noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-31521259961726672512010-07-28T20:02:38.117+01:002010-07-28T20:02:38.117+01:00Lovely to hear a good news story and it's grea...Lovely to hear a good news story and it's great to see EDS getting the respect it deserves.<br /><br />The bit I don't understand though is why Olivia's knees don't continue to dislocate as that suit doesn't appear to offer them support?<br /><br />Perhaps her overall muscle tension has improved sufficiently to keep her knees stable?<br /><br />This suit reminds me of when lycra was first introduced into clothes. I couldn't understand what it was about denim jeans 'with lycra' that made them more comfortable to wear than ordinary denims. Eventually the penny dropped that it was because the lycra offered support to weak muscles around my pelvic girdle. Only problem is, lycra is hardly what I'd call flattering! <br /><br />BTW It's lovely to see Alhi and Achelois both back commenting. Miss you, guys!stephhttp://biopsyreport.comnoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-28291404251095755132010-07-28T13:27:06.627+01:002010-07-28T13:27:06.627+01:00Oh awesome! I want one of these for my ribs and ba...Oh awesome! I want one of these for my ribs and back.<br /><br />And that photo of her in plaster is heartbreaking. Poor baby!Veronica Foalehttps://www.blogger.com/profile/05519401661788911341noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-51814909763582452162010-07-27T22:00:04.702+01:002010-07-27T22:00:04.702+01:00It seems these days that it is the charitable publ...It seems these days that it is the charitable public that makes the difference. I read of another little girl some time ago who wore a similar version to one of these 'suits' and I hope they have allowed some breathing holes in this one, for the poor child was collapsing from heat exhaustion and the school were not being understanding about extra requirements for fluid etc. I can't see from the picture if she is wearing orthotics for her ankles although it is good to see she is wearing supportive shoes. I wish her and her family continued success with the suit and so good to see a smile.<br /><br />Alhi - you have my sympathy with the chicken pox - my children - albeit aged 20 and 17 have just had severe chicken pox and required top dose high strength antibiotics and anti-virals - they were both extremely ill and still recovering. The virus in 'adults' is most unpleasant and my two are still recovering even now. The scarring with the EDS is somewhat of an issue.<br /><br />I hope the suit does help as she is young. Imagine getting a teenager to wear one! Hopefully it will help tremendously with her proprioception - and hope it helps to make her muscles stronger at the same time.<br /><br />I imagine her parents felt let down by the NHS when funding was refused. Thank goodness for the kindness of the collective individual eh!Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-35211458985833147502010-07-27T17:39:33.331+01:002010-07-27T17:39:33.331+01:00Alhi: Aw, thanks-you're too kind! I'm all ...Alhi: Aw, thanks-you're too kind! I'm all ok at the moment though I shall consult you on how to fundraise for the suit later in the year :)<br /><br />6 weeks for chicken pox, you poor thing, it must've been awful?!I'm so glad Tempur rescued you, it really is wonderful stuff! Would it make a difference for you to have one on your own bed? I'll donate if you want to fundraise ;) So glad you're better now XxBenefitScroungingScumhttps://www.blogger.com/profile/08939136229593231935noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-67513409345642098542010-07-27T17:30:46.929+01:002010-07-27T17:30:46.929+01:00Excellent, I'll certainly donate via paypal an...Excellent, I'll certainly donate via paypal and your begging box on pay day at the end of the week! <br /><br />I'm only back at work now: 6 weeks off. Was horribly ill and very lucky not to have been in hospital, thanks to loving parents. Still get tired very easily, exhausted right now. Have been meaning to update blog but must tell you now: I was in agony with it, particularly sitting and lying (and standing!), but remembered my granny had a tempur seat cushion so dad was instructed to look it out. Much better! Then I remembered the bed in the back bedroom has a tempur mattres topper on it so I moved in there. Bliss. I haven't moved out of it since! I sank into it and it was painfree: I have a very tiny idea how you must have felt to get your mattress now.alhihttps://www.blogger.com/profile/17874650104335249662noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-40535748576640100442010-07-27T17:24:32.408+01:002010-07-27T17:24:32.408+01:00Alhi: Hello, are you all better now after the chic...Alhi: Hello, are you all better now after the chicken pox? <br /><br />Yes, she is very lucky and hopefully the suit will help prevent some of the inevitable deterioration for her. <br />Yes such a suit would almost certainly benefit me, it's how the physio with the theraband etc works. Funnily enough my physio tried to get me one of these suits not long before I was diagnosed with EDS but it was refused on cost grounds. So instead they 'treated' me with Botox and made my level of disability about 500x worse. Only consolation being that they no longer use Botox on bendy patients in Liverpool because through mine and one or two other experiences they realised pdq that it crippled us completely! <br /><br />I might think about fundraising once I'm all moved in to the new place & DLA renewal is out of the way etc XxBenefitScroungingScumhttps://www.blogger.com/profile/08939136229593231935noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-79793845986284924322010-07-27T17:20:17.464+01:002010-07-27T17:20:17.464+01:00Oh wow! I hope it does work for her. from what I...Oh wow! I hope it does work for her. from what I know about EDS (courtesy of you BG!) she's incredibly lucky to have been diagnosed so early in life. <br /><br />Is there any possibility that such a suit would benefit you or is it too late in life to try and 'train' your body in that manner. I'd donate to any fundraising attempt you made!alhihttps://www.blogger.com/profile/17874650104335249662noreply@blogger.com