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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 …


20 thoughts on “UNCLASSIFIED types of EDS

  1. I just want you to know how much all your videos mean to me. They have lead me to an understanding and peace of just knowing I’m not crazy and not alone.🥰

  2. 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.

  3. All such beautiful ladies. Praying for you all.

  4. This is so amazing to bring different stories and you give such great questions and thanks a lot to the girls for sharing their story!!!

  5. Are the seizures she talked about epileptic or non epileptic?

  6. Hi, I know this is unrelated but what does anyone know about the topic of EDS and ASD together?

  7. I’ve noticed that a lot of people with EDS regardless of type have curly or wavy hair could have no correlation but I thought it was cool😂

  8. Love your channel ❤️

  9. 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

  10. amazing vidoe i enjoy very cool pretty beautiful stunning queen

  11. 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

  12. How can you have genetic testing to prove u have hEDS when we don’t even know the genes?

  13. 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.

  14. Wow this is super cool info Izzy!! Thank you for continuing to raise awareness ♥️

  15. Just diagnosed with EDS yesterday after 22 years of pain and complications. Thank you for helping me find my diagnosis 💜

  16. Like I present closest to cEDS but my mutation is TGFBR1…and I don’t have the horrifying dissections that someone with LDS1 often has

  17. Me with a COL4A1 Mutation 🙋

  18. 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?

  19. 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!

  20. This is so interesting! Hopefully this video might lead to some connections for Lacey and Madi

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