An Introduction to EDS, HSD, and Gene Testing

In the following video, Dr. Brad Tinkle, Dr. Alan J. Hakim, and Dr. Clair A. Francomano give a brief overview of the Ehlers-Danlos syndromes, hypermobility spectrum disorders and genetic testing, along with a Q&A panel at the end of the plenary session.
EDS 101 - Dr. Brad Tinkle 0:06
HSD 101 - Dr. Alan J. Hakim 16:02
Genetic Testing 101 - Dr. Clair A. Francomano 43:55
Q&A - Dr. Brad Tinkle, Dr. Alan J. Hakim, and Dr. Clair A. Francomano 1:01:54
A transcript is available bit.ly/2kF01h7 - slides for EDS 101 and HSD 101 are available on www.ehlers-danlos.com/2019-na...

[@OyVeyLala]

This is very informative. I’m looking forward to you posting the video from day two when Lara spoke about the frustrations with trying to get diagnosed

[@dhayes1541]

Hurts like H’, doesn’t It!

[@analarson2920]

I pretty much diagnosed myself, got tired of the fibro and sjogren blame as this was life long.

[@OyVeyLala]

@@analarson2920 yes! I was told fibro/sjogren/mood/weight

[@mikellwells3286]

To the statement made about Don't find your mate at an EDS conference.... considering the most common forms of EDS are autosomal dominant, no matter how healthy the other person is, you're still likely to see it in the next generation. Sure, having both partners with a heritable connective tissue disorder will increase the odds, but even with one parent having EDS (in the most common forms, hEDS, vEDS and cEDS) all the children can be born with it anyway. The "don't find your mate at a conference and what were they thinking" comes across as very ableist to me. I don't throw that around lightly. The benefit in having a spouse with a connective tissue disorder is being understood. Horses often have the hardest time understanding a zebra. With a partner who has EDS, both members of the couple can work on creative strategies, be more supportive, and embrace the warrior within each other in a way that horses can't. I do understand why a doctor would have that reaction to some degree, but wouldn't it be just as advisable to discourage reproduction all together under that type of thought? Just my thoughts.

[@dhayes1541]

Mikell Wells my daughter married into a family with an undiagnosed form of EDS. My grandson has EDS and may be affected by 2 forms of the condition. Marrying someone who also has EDS is not a good idea if you are planning to have children.

[@melissafarrugia9531]

@@dhayes1541usually it’s only one form we are diagnosed with.

[@julieshenk7640]

Thank you. Excellent sharing. Honest, open, professional with being personable. Speakers best ones I have heard. Have helped me understand and grasp more fully. Have come a long way with the new classification. Yet more to go as you all indicated. Thank you EDS 🦓 immensely. No longer feel isolated but heard and validation coming.

[@artsychica82]

44:00 Minutes in is Genetic testing

[@Hazel.173]

Thank you

[@kimleon-guerrero9980]

Thank you for this, it was very informative and helpful.

[@firewifer1930]

I was a patient of Dr. Tinkle in Ohio. Would love to catch up with him again.

[@tanialedesma8979]

AWESOME VIDEO!!!! THANKS

[@chaverim5189]

Thank you for this very interesting podcast, I am very grateful for this great content. May I ask a question? I am suffering from: -chronic idiopathic pancreatitis, -chronic coronary artery spasms, -the Arteria-mesenterica-superior-Syndrome, -gastroparesis, - the Ehlers Danlos Syndrome My doctor is thinking about a correlation between all those illnesses I am suffering from. Does anyone know about a correlation between all those different illnesses? If yes, please get in contact with me, I would be very grateful for further information on that. Thank you very much and sorry for this complicated question. All the best, Alice

[@paytonmatzke9721]

Y’all I just slipped a rib 😪

[@analarson2920]

so sorry, get a good therapist, mine helps me do and undo things and educating me when to work through things and when not to. Prayers to the journey

[@paytonmatzke9721]

Ana Larson thanks man! At the hospital right now actually!

[@dhayes1541]

Payton Matzke kI have gotten pretty good at getting mine back into place but it is pretty painful while it is going on. I have managed to put all my dislocations back into place. The shoulder is the hardest for me.