Dr. Alan J. Hakim - EDS and HSD 101: A Clinical Perspective

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Published 2019-06-02

The Ehlers-Danlos syndromes comprise a clinically and genetically heterogeneous group of heritable connective tissue disorders, which are characterized by joint hypermobility, skin hyperextensibility, and tissue friability. The 2017 International EDS Classification recognizes 13 EDS subtypes, for which defects have been identified in 19 different genes that code for extracellular matrix proteins. Some of these conditions are very rare; these are usually very complex and multisystemic conditions. During this webinar, the clinical presentation and (molecular) diagnosis of these rarest EDS subtypes is discussed and illustrated, and management tips are discussed.

All Comments (13)

@TitianTopsyTurvy 4 years ago

Thank you Dr Hakim and The Ehlers Danlos Society for this excellent webinar.
@davegrahamdj 3 years ago

its so refreshing to hear from an expert. I have eds classic and live in scotland. Zer treatment zero knowledge. My skin is sagging yet im skinny, i have severe fatigue. What a life
@christinagiannaros9817 4 years ago

What a great communicator and presentation. Clear concise and easy to understand and best of all no ego/god complex that I have encountered in quite a few specialists sadly. Focused and professional. Thank you Dr Hakim.
@CourtneyPfetzer 2 years ago

I think my daughter & myself suffer from this condition. We check off way!!!! too many boxes not to. No Drs will take us seriously. I lived in agonizing pain everyday for over a year before my Dr helped, now my daughter is starting. I refuse to let her live like that!!
@lindajohnson4676 2 years ago

This and all of your video sessions have been so informative. TY. Because it makes me wish we could go back in time when I (& my kids) were younger to perhaps be diagnosed (earlier as the last slide indicated), where does one find a Dr who can begin the process of testing and evaluating? I need to share info with my adult daughter who lives thousands of miles away in hopes to help us both.
@tutupuff6359 10 months ago

Under diagnosis usually means not enough meds to sell at least in the US!
@saturationstation1446 1 year ago

i got so used to visibly able bodied people (who commit fraud to get disability aid) downplaying and accusing me of faking all the symptoms of this stuff for the past decade that i was starting to believe that there was nothing wrong with my joints being dislocated all the time and my back being the shape of a fishing hook. my digestion being messed up wasnt real. my sleep difficulties and my regular chronic pain not real. my chronic cluster headaches that were so bad i spent an entire year stuck in the fetal position because i was getting them 4 - 8 times a day was also not real. only other peoples problems were allowed to be real and matter. i have never wanted to die more than i do right now, after having watched doctors and family believe people i know are lying about health problems and told nothing i experience is real or could have any negative effect on my life (despite the very visible undeniable effects) because im subhuman and cant possibly feel enough pain to effect my every day life.. i live in a nightmare. i want it to end. i want to see the people who were rewarded for harming me get punished the same way i was punished for simply trying to live through chronic illness
@WildKatatHeart65 4 years ago

Thank you.
@traceyscott1812 4 years ago

When will this be recognized by The American Medical association?
@AlinneaDarklordsSis 4 years ago

Captions? With how common connective tissue degeneration in the ears is in rarer types of EDS it’s a little unfortunate that these webinars aren’t closed captioned.
@kevinbissinger 1 year ago

They just found a gene for the hypermobile version, just fyi for those people watching after 2022
@MOJORAPSCALLION 3 years ago

🦓🦓🦓🦓