Dr. Alan J. Hakim - EDS and HSD 101: A Clinical Perspective
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- Опубликовано: 1 июн 2019
- 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.
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!!
If a GP won't listen try to talk to a rheumatologist or maybe dermatologist. I got crazy lucky and when my GP retired I ended up with a new one who's had a patient with EDS before so I finally just got diagnosed. Good luck
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
Thank you Dr Hakim and The Ehlers Danlos Society for this excellent webinar.
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.
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.
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
Under diagnosis usually means not enough meds to sell at least in the US!
When will this be recognized by The American Medical association?
It is recognized. You need a different doc if they say it's not. If it wasn't recognized these nice docs and other types of providers that give all these talks could not do that. They know here..most don't know out in the world. Show your doctor these resources. It will help you, the doc, and that doc's patients.
It's rarely recognised in the UK, Hakim is a great doctor but is now private like all the rest of the good ones! I spent over 13 weeks in hospital with EDS issues on the orthopedic ward with multiple issues, they sent me home in a worse state as they had no idea what EDS was about. Hakim was contacted about me by the head of department and he suggested I went to rehab for the EDS, even though I didn't meet the criteria. The grass is not greener on this side 😐
Thank you.
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.
We're working as quickly as we can to caption. With medical terminology involved, it's an intense process that is outpaced by the speed with which we produce content, sadly. We continue to try to get there, and we're continually readdressing the topic.
@@TheEhlersDanlosSociety It would be great to be able to print this presentation off also, is it available somewhere?
It does have the automatic captions. I guess nobody has checked them because they're not correct.
@@andreawisner7358 that's typical for every YT or webinar I've seen, not just this. I didn't know it's something it was editable.
They just found a gene for the hypermobile version, just fyi for those people watching after 2022
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