Vlogging with EDS: Ehlers Danlos Society Learning Conference 2016 | Vlog 

Hope you'd having a good evening Christina

I am so excited for you video on splints and braces!

Thanks for sharing!!! So beautiful!

omg packing is a nightmare when you are a spoonie!!

Hi Christina. i just came across ur videos today. Love it. And im hoping one year to make it down to the conference myself. Btw when u did the hairspry clip- i died. lol i was like okay shes a fellow eds'er new yorker who loves musicals?! omg we r best friends! lol

Thank you for this video, I wish we had one in the UK (though I couldn't help but notice my doctor's name on your program!) the only UK conference is for Vascular. The last few minutes of your video made me tear up.

ugh i feel u. i drink aloe vera every day and over 4 months after i felt less pain. i been dealing with it since 3 yrs old and i lost my teeth early as hell by 7 as well as my chronic neck and joint crap. i live in illinois

Love watching your videos and I think we would be like two peas in a pod personality wise and medical twinsies haha (gosh I hope that comment didn't come off creepy or weird in ANY way haha I swear I'm a totally normal girl like you just trying to connect with people who understand this life we now live (although this is much much newer for me diagnosis wise; like literally just found out finally, about 3-4 weeks ago but I've learned so much from especially your videos)--so thank you for taking the time to make them and I'm so glad I saw this one bcuz I live in Virginia but only about 1-2 hours from Baltimore so I'm definitelyyyyy going to look into this years conference now since it's so close and gosh I'd love to make friends who understand this misery and don't feel totally ALONE like I do right now (since I don't know anyone in real life or whatever who has EDS that I know of--and I don't quite get out much as do most of us soooo ugh one day hopefully I'll be able to connect with others! Lastly, you have an awesome mom who's so amazingly supportive and willing to do whatever it takes to help you feel and get better and enjoy life to the fullest-- which is wonderful and I'm so happy you have that! Mine on the other hand, used to be like that for a long long long time but has literally just recently given up/sick of it/done taking care of me cuz it's just always been never ending surgeries hospitals this that etc and now when I need her the most she's just gotten to the end of her rope taking care of me....which I understand.... it's been a long long grueling process and she's been by my side through every second of it like yours but its just been too much weighing on her from being my mom, caretaker, maid, cook, home health nurse, chauffeur, etc etc (not literally those things, you get what I mean, right??) it just sucks and I feel totally completely alone and helpless and that's like the last thing I need right now! Ugh anyway sorry to make that turn super depressing :( sooo I hope you continue to make these awesome videos and maybe one day we might bump into each other at this conference or something medical related haha keep up the awesome work &'positivity girl!!! From one zebra to another :)

I was all about this while I was there, as I had just been dx'd in Feb last year. But what the Society has done in terms of the weak criteria (which are research-level, not diagnostic) are too stringent, and are causing many, even if sicker than when they had been first dx'd with hEDS, to be told that they now only have "HSD." To me, this is COMPLETE nonsense, that is easy to see through. I'm way, WAY more ill now...but my stiffened Beighton joints (which the Society previously said were to be expected!!!), and lack of enough marfanoid symptoms (as well as the fact that I'm not willing to throw my sister under the healthcare bus in order to keep my dx!), would mean that, despite being sicker due to MCAS, POTS, and likely Chiari...more subluxations...but stiffness in some joints, from decreased mobility, or bracing/hyper-protecting those joints, now means that I'd have what the Society calls an "HSD," rather than hEDS...when my hEDS is COMLETELY apparent, more now than ever! Unbelievably disappointed in how the Society obviously changed these criteria to make hEDS, and EDS in general, SEEM more rare than they actually are...to gain more rare disease funding - as they did in the U.K., RIGHT AFTER the new criteria being released. Tinkle and Levy themselves admitted that 85-90% of hEDS patients would lose their dx...and the head patting comment of "oh, HSD patients should also be treated equally," is a bunch of nonsense. The new name was made SOLELY FOR THE PURPOSE OF MAKING THE EDS NAME ITSELF MORE RARE. The statements seen here of us all still "having each other" were a total lie, in terms of them having our best interests at heart. There is nothing wrong with stringent research criteria, but there need to be SEPARATE diagnostic criteria...that is how these things always work. Also know many that are peer-reviewing these papers, that agree that they are total hogwash. That same group that trotted us out in the noisy crowds, in the heat, a bunch of very ill people...just for a photo op. I no longer have any belief in the Society's organization, and look forward to them hopefully redeeming themselves by restructuring. For now, they will not be getting another dime of my money. :/

hi! which medicines are there in the grip? PS : I have Eds too

Hi Christina. I was wondering do you have to sleep with the neckbrace every night? I will need in the near future and I'm currently waiting for my neck brace.