Think you have EDS (Ehlers-Danlos)? Here's what to do

Are you or your doctor suspecting you might have Ehlers-Danlos syndrome
(EDS)? In this video, we discuss the diagnostic process and basic information about EDS.
It can be extremely difficult to find a knowledgeable doctor who can diagnose EDS. In the meantime, many people are left in limbo while searching for the doctor who holds the answer. Many people have questions about EDS, its inheritance, and its disease progression, and I hope this video can help you with these questions.

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:
MORE INFO ABOUT POTS:
MORE INFO ABOUT GASTROPARESIS:
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:

FTC Disclaimer: This is not a sponsored video.
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#eds #ehlersdanlos #ehlersdanlossyndrome

[Dulcimerist]

The best thing about getting properly diagnosed with EDS is knowing what you have. It deflects the "all in your head" gas lighting from doctors, and opens the door to better treatment of the various symptoms that EDS can cause. EDS researchers are constantly thinking outside the box and coming up with good treatment options. Medications such as beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine have had a lot of success in managing EDS dysautonomia, for example. Additionally, knowing you have EDS is important to other doctors - surgeons need to know that your skin can tear more easily, and dentists need to know that you're likely resistant to local anesthetic due to your EDS. Being properly diagnosed with EDS is empowering for a patient, and leads to better overall medical care.

[lorenam]

I'm a 47 year old woman, and about 4 months ago I finally figured I have EDS, and while the symptoms were relatively mild before (no prolapses or dislocations), they were definitely there since I was literally a baby: my mother always bitterly complained that she couldn't breast feed me because I would inevitably start vomiting, and until I was 2 years old, it was practically impossible to feed me while I was awake.
About seven years ago, around the time I turned 40, all those symptoms started getting worse and worse, to the point where last summer I could barely get out of bed. And like I said, it was shortly after that that I realized I have EDS.
Now, here comes the important part: after I figured what was the problem, I started wondering why suddenly I started getting worse, after an entire life with relatively mild symptoms. And suddenly it occurred to me that it could have something to do with hormones. After all, as I get closer and closer to menopause, my hormones are progressively dwindling.
Well, long story short: I started early Hormone Replacement Therapy (HRT), basically just started taking the contraceptive pill to supplement my hormones and stabilize them. And lo and behind, I am doing much better. Not perfect yet, but improving little by little.
So for any women out there getting worse symptoms around their 40s, you might want to look into that.

[nixd]

I understand the stigma and hesitance surrounding self-diagnosis, but I will continue to say I have EDS. My doctors are all 99.9% sure that I have it, but can't officially diagnose me because they aren't specialists. The waitlist for the specialist is 2 years, I've been misdiagnosed 4 times and this is the only condition that aligns with every single one of my symptoms.

A diagnosis is absolutely a privilege, my doctors say that I have EDS, but still refuse to give me an official Dx. I think self-diagnosis can be harmful, but we know our bodies better than our doctors do lmao

[HollhouseVanHouten]

I got my official HEDS diagnosis!!!! If it wasn’t for your YouTube channel and your incredibly helpful videos I probably would have waited many more years before seeing a specialist rheumatologist. Thank you Izzy ❤️

[Zamstein]

For me, the diagnosis helped because I had a therapist misdiagnose me with hypochondria.. and not for general anxiety about my symptoms, for the literal symptoms of EDS.

[sarabartel]

Hypermobility on it's own is definitely not enough for a diagnosis, but make sure to look into all the comorbidities and side effects, and be honest with yourself. I am diagnosed with HEDS and my brother is more hypermobile than me, but that's it, he's perfectly healthy. It took me a long time to get diagnosed because I didn't understand that my constellation of symptoms weren't just "complaints, " but valid pieces of information that doctors need to make an informed diagnosis.

[rhyan.m]

My rheumatologist was awesome and listened to everything I said and believed me. He told me he believes HSD is the same thing as hEDS

[gothfairy]

A professor who has EDS first tipped me off to the fact that I have a ton of symptoms. After a horrible rheumatologist tried to tell me my pain was my own fault, I went to a physical therapy screening. The therapist had seen a bunch of patients with EDS and after testing my joints and asking about my pain, she was immediately sure I have EDS. She was so surprised at how much it affected my gait; all the therapists in the clinic had never seen a gait quite like mine. Apparently I've been hyperextending my knees for YEARS while walking.

[Dulcimerist]

5:35 - It would be good to elaborate that the 14 different types of EDS can have varying degrees of hypermobility. For example, the hypermobility of vascular type EDS tends to be confined to just the fingers and toes. Someone with vEDS might not be hypermobile in their larger joints (hips, shoulders, knees, elbows) at all.

[shaunar]

Hey girl! I’ve dealt with issues my whole life, and especially the past two years due to IIH. Long story short, I stumbled across EDS as I was researching for an upcoming surgery. You were one of my first sources of information. Fast forward a few months, and I’ve been diagnosed with HEDS. Thanks for making me feel a little less alone, and thanks for helping me get answers about my body so that I can be treated properly ❤️❤️❤️

[Loveandkindness]

A mythical Zeba unicorn here— hEDS, MCAS, POTS, hypoglycemia, Castrochondritis, dystonia and Cranialcervical Instability. Didn’t get diagnosed till last year (2021) when I was 37. I was diagnosed clinically by my PCP and confirmed my my Neurologist. In pain 24/7 but being on Low Dose Naltrexone, CBD/THC (3:1) and Penetrex cream; this combo has made a huge difference.

I wear a neck collar, (hard and soft) ankle & wrist stabilizers, leg compressions and arm stalkings/gloves, custom Orthopaedic shoe inserts, posture corrector and sometimes need to use a cane. And I go to intensive PT 2 times per week for over 2 1/2 hours each time. This combo has made life more bare able but I’m still pretty miserable and hurt more often than not. I get terrible flare ups that can last from a day or two to weeks. And sometimes I get them back to back.

But, if I wasn’t doing this things, I can’t even imagine what life would be like! My major symptoms didn’t start making themselves known till Feb 2021 and it was from sudden chest wall pain. Then the Mast Cells started acting up. I’m on a low histamine diet and take a DAO enzyme supplement with each meal and am now able to eat pretty much anything I want. But there are a few things that I just can’t tolerate like avocados, spaghetti/pizza sauces and high amounts of sugar like a slice of cake.

I am also on full disability. Very blessed to have a wonderful support system and my husband fights this battle with me! I hope by sharing all of this, it can help someone else also. You’re not alone!!

[jocelyntownsend]

I thought I'd share this. Three of my best friends throughout my life got diagnosed with EDS or had a family member with EDS, then learned that I have EDS so showed me how stretchy their skin is and how hypermobile their joints are (plus their history of allergies) and then two other people I worked in a lab with have EDS. While I agree that birds of a feather flock together, I think a lot of people just aren't getting diagnosed or misdiagnosed. I think people who are 40+ likely have misdiagnosis because they didn't look for EDS often in the past.

[DeanandCasTrash]

my rheumatologist diagnosed me with hypermobility spectrum disorder and refused to diagnose me with eds as she said i had to see a geneticist to get a diagnosis but she told me it wasn’t necessary bc there is no treatment 😀 gr8

[sicqt]

I’m lucky to be the first comment on a celebrity’s video🤪😊

[Gibby_Gamer]

Thank you for videos! My 10 year old daughter was diagnosed with hEDS today. I found out about EDS from you on TikTok. It made so much sense. Our family dr said he’s never seen anyone with EDS and it was impossible for her to have it. I went behind his back and took her to a rheumatologist. She was diagnosed right away! I can’t wait to see what the GP has to say about it! 😂

[mariethedicedragon]

The way my Dr put it was that the EDS itself does not get worse but the symptoms do. The EDS is in your genetics, it does not change. The long term effects that it has on your body can get worse, just like normal stress on a non EDS body.

[jessicabohl]

i recently saw a rheumatologist to try to get a diagnosis and he spent 45 minutes focusing on my flat feet and told me if i just fix my feet all my problems will go away 🙃

[gwuniverse]

This is such a fantastic and comprehensive guide, Izzy! Getting diagnosed with EDS can be a huge challenge. Here in the UK a lot of us end up in a sort of 'grey area' where if hEDS is suspected we aren't offered genetic testing or sometimes even denied rheumatology appointments, instead just given physio. I'm so glad you mentioned how important a diagnosis can be to patients because it really can be life-changing in terms of validation or access to support. But also, super tricky to get there for some of us!

[Luna]

It was my GI doctor that said I might have EDS, right now I’m still working with my doctor to see if thats true

[riannaf]

seeing your videos is what made me push my doctors to look for a real answer rather than just brushing me off. I'm now in the process of seeing if I have hEDS and am getting more support so thank you :)