UNCLASSIFIED types of EDS



Ehlers-danlos syndrome is classified into 13 types, but did you know that there are actually more than 13?! In this video, we talk with two people who have …

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20 Comments

  1. It’s so interesting hearing everyone’s unique stories. I love when you do interviews, Izzy. Thank you for all your hard work and dedication to our community.

  2. Thank you so much for making this video! I love your style of videos. You share education info in such a fun and unique way! Love learning more about this disease

  3. We are diagnosed with H-EDS, but we have known mutations for SCD-EDS maybe one day we’ll have an answer on whether or not we actually have SCD-EDS or not, but thats not until more research is done im assuming. -Annabeth and Hermione cofront

  4. I'm very interested in the fact that Madi was diagnosed with a subtype of EDS as opposed to a type of Marfan's because traditionally, EDS is a collagen disorder and Marfan's is an elastin disorder. I suppose it's because Madi's symptoms are more similar to traditional EDS symptoms but it still seems strange to me.

  5. I was told years ago I have Type 3 Plus. Has anyone heard of that type? I have also been down the MS road, been diagnosed with Pre-MS and am going to be seeing a neurologist again soon to have it ruled out again now that I'm almost 40. I was told I'm Type 3+ because
    -mine is so severe in the joints. I started surgeries at 6 yrs old on my feet due to walking on ankles. By my 20's, I had 16 surgeries. I'm now 38 and have been delaying spine, double knee and double hip for a while. Ribs at shoulder blades dislocate, spine dislocates, many others.
    – have lesions on the brain
    -growths on spine.
    – complex partial seizures (without activity on EEG)
    Possible MCAS (I was just introduced to this and am going to talk to doctor about it)
    -severe nerve damage
    – memory/vocab loss
    -severe leg tremors that can start out of no where and/or start when leg is put under stress (like when doc does strength test on legs or when I get scared and legs stiffen up). My arms and upper body shake 95% of the time non stop as well.
    Among other symptoms including a few bouts of beginning stages of kidney failure. I was told the "+" basically meant that I crossed over into other types. What would you guys call that?

  6. Hi Izzy, thank you for doing this video!! I don’t have one of the types of Eds however I have never been genetically tested, my chart literally says Ehlers Danlos Syndrome “unspecified”. You did however with this video make me go down a rabbit hole after hearing the heart defect info I did more research. I have an atrioventricular septal defect, but was told I didn’t need genetic testing because I didn’t have any signs of dissection or aneurism. This video makes me think I should try to push for the testing myself tho, because I learned that defect is more common in classical and vascular 🤦🏻‍♀️🤦🏻‍♀️ so thank you!

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