tag:blogger.com,1999:blog-5548560205914833324.post9199587598142891683..comments2023-04-23T00:16:48.148+01:00Comments on Questioning Answers: Joint hypermobilityPaul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-5548560205914833324.post-83356764450176500422012-05-06T23:12:06.296+01:002012-05-06T23:12:06.296+01:00Why are there no patient based charities for HMS /...Why are there no patient based charities for HMS /EDS and related conditions to raise the money needed for research ?.https://www.blogger.com/profile/08616979828749624052noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-66194490904720341612012-04-23T18:47:36.646+01:002012-04-23T18:47:36.646+01:00Many thanks for the comment Robinsons.Many thanks for the comment Robinsons.Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-82791271058276311752012-04-23T18:00:11.854+01:002012-04-23T18:00:11.854+01:00Thanks for this post and your more recent one on c...Thanks for this post and your more recent one on co-morbids. There is a lack of formal research looking at a connection between autism and hypermobility. Apparently one of the professors who is the leading expert in hypermobility (can't remember if it is Bird or Graham) has noted that many of his patients have both, but has said that there is a lack of money for this area of research. <br /><br />I suspect that some people end up with one or the other diagnosis depending on which symptoms are most difficult to live with. When my son was young it would have been ASD that we needed a diagnosis for but now that he is a teen it is his hypermobility that is most difficult for him to deal with so that is the formal diagnosis that he has.The Robinsonshttps://www.blogger.com/profile/14194377253657913625noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-55466686817286356482012-03-10T18:23:23.982+00:002012-03-10T18:23:23.982+00:00(10/03/12) And as if by magic: http://www.ncbi.nlm...(10/03/12) And as if by magic: http://www.ncbi.nlm.nih.gov/pubmed/22401670Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-15570201636248705492011-12-06T09:53:50.758+00:002011-12-06T09:53:50.758+00:00Thanks Diane. Echoing the sentiments of the post, ...Thanks Diane. Echoing the sentiments of the post, maybe it is time for some formal research looking at any connection between autism and hypermobility.Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-65952858314056602932011-12-05T23:01:58.417+00:002011-12-05T23:01:58.417+00:00Thank you for this read! My children have Ehlers-D...Thank you for this read! My children have Ehlers-Danlos AND Autism Spectrum Disorders very interesting to consider the link. I do know many parents with EDS children that have been told they have ASD symptoms or vice versa with hypermobility and such.Anonymoushttps://www.blogger.com/profile/11700709711042701425noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-4875764931552365732011-11-28T20:10:13.051+00:002011-11-28T20:10:13.051+00:00Thanks for the comment Emma and the additional inf...Thanks for the comment Emma and the additional information.Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-55362380476023685382011-11-28T20:02:40.636+00:002011-11-28T20:02:40.636+00:00Hi, I have ehlers-danlos syndrome and actually joi...Hi, I have ehlers-danlos syndrome and actually joint hypermobility syndrome is a listed type of ehler-danlos, though most forms of ehlers danlos (and marfans) feature hypermobility. Also, kids in general are more hypermobile and can grow out of it, so assesment of all joints and investigation into other factors to know for sure (is the aorta and heart healthy? Are their scars papery? do they bruise easily and heal slowly? etc)often even children are not diagnosed dyspite hypermobility and family history of ehlers danlos simply because the doctors wait until the all-kids-are-bendy age has past, around puberty and after to make a definative diagnosis. Also, ehlers danlos and autism do seem to be linked, as with other conditions also, I am myself a combo of rare and yet related conditions, the connections of which are still wholly not understood. Hope this helped, thanks for blogging about us eds-ers, we rarely get a mention! :) xEmmahttps://www.blogger.com/profile/09741788737588200682noreply@blogger.com