Genetic Testing and Diagnosis of EDS and HSD - Lauren Puryear, MS, CGC

The journey to a diagnosis of EDS or HSD can be long and filled with frustration. This webinar, presented by Lauren Puryear, will address how these conditions are currently diagnosed as well as some important basic information about genetic testing. It will also cover some of the possible reasons there is not (yet) a genetic test for hypermobile EDS or HSD.
Transcript coming soon! Slides used in this presentation are available from bit.ly/2mfaHDJ

[@Katyestella63]

I am 56 who has been searching on information on how to get a diagnosis for the Ehlers-Danlos even though I have lost my hypermobility (historical) in the UK on the NHS. I have been looking for advice on genetic testing but it is only for parents who are going to have children or have children and I do not fit that criteria. Please can you advise me. I am on the autism spectrum and I have been diagnosed with fibromyaligia. My late father had ankylosing spondylitis.

[@TheEhlersDanlosSociety]

Please search ehlers-danlos.com for more information, or get in touch through www.ehlers-danlos.com/eds-helpline/

[@SweetiePieTweety]

I too am your age and family presents with symptoms of vascular EDS with variable signs of hyper mobility. In that family line my children’s generation have multiple autism diagnosis. NGL watching the RUclips Autism adult content producers many present with viable and testimonial symptoms that lend towards EDS. I was curious if you have children or family members who also share this EDS Autism present. I’m always curious as to how many out there diagnosed with autism are actually EDS and maybe not true autistic if it there is a autism EDS connection. When autism is diagnosed by psychological and EDS medical there is a disconnect in making a true diagnosis evaluation.

[@brendag2891]

​@@SweetiePieTweetyDid you find a link between EDS and autism anywhere? I have noticed this, too.

[@brendag2891]

​​@@SweetiePieTweetySo true, with medical diagnosis of EDS and neuropsych evals for ASD, it really seems like a disconnect. I have family in the Midwest of the US on the autism spectrum with "associated scoliosis" and EDS, all from different healthcare providers. It seems that the primary diagnosis pushes the EDS diagnosis and treatment to the side, so nothing happens regarding help for EDS.

[@brendag2891]

​@@TheEhlersDanlosSocietyI searched the website and can't find an article or list of genetic testing companies who can truly test for EDS. Mayo clinic in Rochester, MN said they cannot provide genetic testing. So we are looking for another US lab. Mayo said your website had a list, but I can't find it.

[@boduab4550]

I'd love to know the moderators full name but the mic cuts her last name off... im Sarah jo Coogan and would love to meet another Sarah jo. :)

[@Correctrix]

Seriously, you couldn't clean the audio up a bit afterwards?

[@alenamichaelaa]

damn it’s not even that bad tbh

[@deliberateserendipity181]

@@alenamichaelaa my thoughts exactly.

[@liannemarie2504]

​@@alenamichaelaait's actually very distracting and making it very hard to follow.

[@alenamichaelaa]

@@liannemarie2504 sorry abt that at least there’s subtitles though!

[@andethidialbubabibub3261]

The fck is this audio..