Overlooked Early Signs of Our EDS

Рет қаралды 131,221

6 жыл бұрын

Looking back at our old symptoms that went unrecognized before our Ehlers-Danlos Syndrome diagnoses. Don't mind the blue tongues, our weird faces, and my overly-fast speech haha!
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
#eds #ehlersdanlos #hypermobility
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Пікірлер: 814

@emilyb5834 5 жыл бұрын

Look at all of this VALIDATION OF MY CHILDHOOD ISSUES

@BD-to6md 5 жыл бұрын

Ladies: I’m a 55 year old woman who has EDS. I’m commending you for this video. You’re helping people who’re facing massive oppression. God bless. 💕

@holliewilson4240 5 жыл бұрын

❤ when I was in high school my dad always joked around and would say "you are 17 with the health problems of a 70yr old!" Thanks EDS lol

@AdorableAcushla 5 жыл бұрын

Teachers always accusing you of being lazy. Having trouble breathing and being dizzy but not having asthma they told me I was faking for attention.

@beccahansen2 5 жыл бұрын

This is my life but everyone would just tell me to stop being dramatic

@aleymarie100 5 жыл бұрын

The walking part: the way I explain it is it feels like I'm walking with loose doll legs

@jamee_maree 5 жыл бұрын

The dark circles.... man. I’ve had them since I was a child and it’s never made sense.

@kendralewellyn2654 5 жыл бұрын

Wow, I did not realize how common the handwriting (or the hand raising) thing was. I hold my writing utensils funny too - like, I have two fingers below the pen/pencil, and then use my thumb and other two fingers to hold it in place, so I can actually be able to control it.

@jennagallagher4462 3 жыл бұрын

Does anyone else’s jaw click like every time they eat

@madisonbarsell8639 5 жыл бұрын

when they started talking about pain I realized my hands, lower back and hips hurt....

@clairejeske4438 5 жыл бұрын

Did either of you have horrible "growing pains" nearly daily? I got them almost every day, mostly in my legs, and they were so, so painful. I have very few clear memories of my childhood but (sadly) one thing I can so clearly remember is just how bad those pains in my knees and ankles hurt. It was like someone was grinding a screwdriver into my joint. My mom took me to the doctor when I kept waking her up crying from the pain and my doctor said they were just bad growing pains and I'd grow out of them.

@lillyrose3545 4 жыл бұрын

I am comforting my inner child and validating her through this video.

@neongray7959 5 жыл бұрын

This was very relatable everyone kept saying I was weak and dramatic

@elisabethsmith4577 4 жыл бұрын

I can completely agree with the thought of “is this in my head”. I grew up thinking everyone dealt with the pains and sickness I dealt with because I was always called dramatic! I was recently diagnosed with gastroparesis and I’m thinking it could be related to a connective tissue disorder that I’ve missed for my whole life! Thank you for spreading awareness!

@M4R3B34R 5 жыл бұрын

Absolutely no one:

@Andrea-rx8bf 5 жыл бұрын

I had a lot of issues as a kid with my handwriting and "growing pains", dark circles around my eyes, and just pain pain pain all the time. My doctor told my grandma that I would grow out of it, I was just really flexible. At 15 I was officially diagnosed with EDS hypermobility. I went through physical therapy for two years with almost no progress. I almost didn't graduate highschool because how many days I missed. I'm 26 trying to deal with the pain and loved ones not understanding what I'm going through. I have so many of the same symptoms as you guys. Frozen joints are the WORST. Thank you guys for making this video. More people need to see the signs especially in their children 😘

@MrsW0f0rd 2 жыл бұрын

Omg, I'm recognizing so many things that I didn't realize weren't normal and were totally EDS-related when I was a kid.

@Rinikatt1003 5 жыл бұрын

Oh my god!!!! I didn’t realize that the under eye discoloration was an EDS thing!!!!! Ugh how did I not get that?!?!

@analuisa1214 5 жыл бұрын

I think that the hardest thing is to adults understand that we are in pain all the time, and as they just move on, like it is nothing, we start to believe that it is nothing too! I don't have EDS, but I have a lot of things mentioned in the video, and as I am so used to that I don't even realize that I am feeling it, I only remember about it when it is so bad that I need to treat it in the hospital :P it sucks

@corallaroc 5 жыл бұрын

Omg, can't believe you mentioned the walking thing. I used to get that, although thought it was just a self-conscious thing. But it was like 'how do I walk again?' It felt so weird!