Posted on August 26, 2021August 26, 2021 by admin — 20 CommentsUNCLASSIFIED 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 … source Post navigationPrevious post: Dealing with Side Effects with Dr. Philip ChangNext post: Derrick's Weekly Webinar 20 thoughts on “UNCLASSIFIED types of EDS” Bobbe Kearns August 26, 2021 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.🥰 Reply Amber H August 26, 2021 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. Reply dragon in winter August 26, 2021 All such beautiful ladies. Praying for you all. Reply ALONA S August 26, 2021 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!!! Reply Cherry Swiftie August 26, 2021 Are the seizures she talked about epileptic or non epileptic? Reply Hannah T August 26, 2021 Hi, I know this is unrelated but what does anyone know about the topic of EDS and ASD together? Reply Malana Marie August 26, 2021 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😂 Reply Jose Contreras August 26, 2021 Love your channel ❤️ Reply Jaycee X August 26, 2021 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 Reply Dominik Benz August 26, 2021 amazing vidoe i enjoy very cool pretty beautiful stunning queen Reply Annie Williams August 26, 2021 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 Reply basha G August 26, 2021 How can you have genetic testing to prove u have hEDS when we don’t even know the genes? Reply Hazel D August 26, 2021 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. Reply Amber H August 26, 2021 Wow this is super cool info Izzy!! Thank you for continuing to raise awareness ♥️ Reply Julia Verde Ciria August 26, 2021 Just diagnosed with EDS yesterday after 22 years of pain and complications. Thank you for helping me find my diagnosis 💜 Reply ReineDeLaSeine14 August 26, 2021 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 Reply Isabel DeJesus August 26, 2021 Me with a COL4A1 Mutation 🙋 Reply Randi Brammeier August 26, 2021 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? Reply Michaela Earhart August 26, 2021 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! Reply Naomi C August 26, 2021 This is so interesting! Hopefully this video might lead to some connections for Lacey and Madi Reply Leave a Reply Cancel replyYour email address will not be published. Required fields are marked *Comment * Name * Email * Website Save my name, email, and website in this browser for the next time I comment.