Thanks for making these podcasts!

Thank you. I remain undiagnosed for the nonce, but there is almost zero doubt I have EDS. Hyperemesis, usually associated with pregnancy (gravidarum hyperemesis) or cannabis overuse, can kill people like us. Discovering ondansetron ODT was nothing short of a miracle.

Wow! Thanks! I have a dissection in a similar area thanks for doing this video

So your face and hands look a lot like my face and hands. No official diagnosis so far tho

Thank you Katie, I have recently found your shows and have been catching up on them. It means a lot to me to watch and learn about my condition of vEDS. It helps to not feel as alone. Grateful for your voice.😊

I can touch my forearm with my thumb, also have a mitral valve prolapse and flat feet. Does that mean I have EDS?

🫂❤️ thank you for sharing your life 🙏🏻

Where did you feel the spleen pain exactly? I’m very worried I have a spleen related issue. What other symptoms did you experience. As many details as you can include the better. Thanks

❤🙏🏼🐩

Thank you Katie. As someone who has vEDS, it’s is deeply helpful to hear your experiences and knowledge. I understand your anger. I myself have for years turned my anger inward in the form of guilt. Torturing myself with the idea that if I had or had not done certain behaviors, such eaten more protein or taken certain vitamins or you name it, I wouldn’t have vEds or at the very least it wouldn’t have worsened. Mostly illogical but still it persists. I am grateful for your openness with sharing your struggle. Having said that, Take care of yourself and take breaks from sharing when you need to. My best to you.

Thank you for sharing about your SRAD. I have a right accessory renal artery dissection and am wondering if the incredible pain was a cramp or the event. it only lasted 5 minutes or so. They tried expanding mine with angiogram intervention. It lowered my blood pressure for 1 week then the BP went back up. Kidney function is normal but I have to keep BP stable with meds every day. My renin is high. Did your renin ever go down as the kidney died?

I’m so grateful for you doing this for us all, Thank You Katie ❤

Thanks for sharing your story! I feel you about diagnosing EDS! I thought I had vEDS for a while due to my family members having vascular issues with their heart and the bruising. No genes indicated in the genetic testing for it. I do have hEDS but its mild/moderate since I do physical therapy to prevent my limbs from popping out of their sockets 😅. I am sorry about the run around doctors gave you, like a common story for all EDS folk. I was diagnosed early at 7 because I had tethered cord surgery and my surgeon also specialized with EDS Chiari+tethered cord patients. I was lucky to be diagnosed early so I could know what to do. I was still brushed off a lot in the 2000s as a kid by doctors until recently now that I am an adult and doctors are more aware of EDS.

Hi, Katie! Isurvived a massive stroke in 2018 at 41from dissections of both internal carotid arteries and my right vertebral artery causing a right middle cerebral artery infarction. I recall having shard pains in my neck and inability to move my neck for about 2 days in law school roughly 7 years prior to my stroke. Genetic testing didn’t reveal VEDS or any other connective tissue disorder, so ¯\_(ツ)_/¯ as to the cause of my dissections.i had other episodes of neck/trap muscle pain and headaches/migraines. Your videos are informative and welcoming; Sharing your story may save lives. Thank you for sharing. I feel inspired to share my story now.I do have tortuous arteries, which docs believe might be a connective tissue disorder-in my neck looks like spaghetti thrown on a wall.

I appreciate this greatly.

I have Veds. I was diagnosed at age 58 when I had a sudden ascending aortic dissection. I always knew since a very young age that I was different. My diagnose was a great relief to know that I have not been crazy all these years that I have been going to doctors with various problems. My Veds significantly advanced in the last few years. My whole body fatigue has worsened greatly. I cannot express how difficult this condition is. I appreciate very much finding you. Thank you .

Same

Thank you for your videos ❤❤❤❤❤❤❤❤ I just got the diagnos eds and my little dotter is having so problems with the digestive system so she probably is also eds 😢 From my heart 💓 thank you for cheering ❤

Hello Katie, firstly thank you so much for your channel and videos, you've helped me understand and cope my own illness since my own diagnosis a couple of years ago. I still have unresolved issues and concerns about my future but hearing others with similar experiences and sometimes exactly the same medical history is helping me.

Please let me know any info or testimonies of people who've healed their spleen, especially if you know any who had enlarged spleen. Very thankful for anything you've found. So glad you're ok

I had the same like three months back and gone through two episodes , well after many tests and diagnostic procedures the neurologist concluded it as Nini stroke due to APLA syndrome, bcz the profile was little elevated in two lipids..but other two doctors noted can't conform as APLA syndrome since the second investigation ( APLA Profile ) took places after 12 weeks ..Anyway I am confused and follows the medicine Aspirin and Warfarin..and has alot of difficulties due to mental state . Medicine impact etc...let's move and hopefully I will be fine.

Wow this is so fascinating, everything you’ve described in this video is exactly my experience, down to the collapsed nasal passages and struggling to pass scopes through. When I flare my nostrils, it actually narrows my nares and makes it a bit harder to breathe. I had a complicated dental extraction when I was a kid and I remember the surgeon looking at the x ray and describing my sinuses as “cavernous”; there was barely any room left for the roots of my teeth! So weird how a genetic mutation can affect every little part of our physiology. Glad I have something to blame for my whistly, beaky schnoz.

Wow, you are amazing and your story is an example of the imperfection of the medical community. I bet there are a lot of people out there who are chasing after a diagnosis of some kind. I wish you the best for a healthy future.

Sounds like these care gives are clueless.

You sure have learned a lot about this. Thank you for this video. I'm sorry this has happened to you. You are a nice young lady and this must have been a nightmare for you. God bless you, dear lady.

Thank you for sharing your story.

You're beautiful Katie 🤟🏼

As someone who has had health issues, too many to name, and been gaslit so much by the medical community, I had never heard of this. Thank you for sharing your story, I can’t imagine how many people you’ve helped/educated.

So proud of you for being your own best health advocate. 💕

Think you, we found out my wife has vascular EDS in 2016. in 2015 she got four stents because of brain aneurysms. This year it was confirmed that my daughter and my oldest boy also have it. My daughter got two stents in her neck by her ear. And my son got one stent in his upper leg. My youngest boy hasn't been tested. Neither have my four grandchildren, but we're working. I hope you have a great day my friend.

Thank you.

Thank you for sharing. I have had issues with spontaneous artery dissections since jan of 2023 (i had no physical trauma during this time to cause this) and have been continuously monitored since then. I initially thought i pinched a nerve when this all had first started back in dec of 2022 i go to the gym pretty frequently so i thought this was a one off thing. No amount of tylenol or ice would alleviate much of the pain i was feeling i end up after almost 3 weeks going to a urgent care to then be told i needed to go to a er for ct scans. Ended up at a er was told it was super rare but that i possibly had a artery dissection but that he highly doubted it as i am otherwise health minus my blood pressure being threw the roof at the time. Welp turns out i was the rare situation i had a dissection in my internal carotid artery and a blood clot sitting in the left subclavian 🫠. I saw many specialist and still dont have a answer i finally see a geneticist in a couple weeks. I have a high suspension i have veds and pots 🥲

You two are ❤ no words to express how sorry I am how much you suffer

I have veds and it's a monster

Oh!!! My!!!! God!!!!! I’m literally almost in tears hearing that someone else deals with contractures and EDS! I’ve had mine about 9 years now and they’re so isolating when no one understands how to stop them, or why they’re happening ! Thank you for this

I’m suffering with same issue. My right artery is blocked above 50%. Is it normal or do I get a surgery for this condition??.

Oh man, I wish I would have caught this live. I have so my questions for you seasoned veterans! ❤

The comment at 6:00 about not knowing why’d you go to work that day with such severe pain, Yep! It’s like You could be Nearly Dead but because you aren’t You go to work. My son got sent home today after I told him He should call in sick… 😂❤😂 Then You mentioned the colour of it being yellow and blue… sinesthesia My youngest son has it, I never knew till He was 12 years old..

Thank you for sharing.....My experience has taught me not to rely too much on doctors especially in private hospitals. Always get a second opinion.

EDS sufferer here. Went through 2 long labors, 24 hrs and 31 hrs, no epidural. Migraines since 9yrs old, syringomyelia, chiari 1 malformation, scoliosis, neuropathy etc... If you consider labor pain a 10? This neck pain goes from 20-50. I am not exaggerating. This pain is a pain that is impossible to live with. I am so sorry this happened to you.

I'm so glad you're doing better... You've had a rough few months & it's nice that you're healing & things are slowing down. 💕 The research on Spiro is really cool!! It makes a lot of sense that blocking Androgens would be beneficial for the health of fragile blood vessels. I have Hypermobile EDS & started Testosterone a year ago [Non-EDS reasons lol] & it's done wonders for my joint instability & POTS. I look forward to hearing more about your experience & the research as it develops!!

I'm currently trying to figure out what is causing many unrelenting chronis pain in my head and neck and am experiencing the same dismissive answers from doctors. My MRI was abnormal showing "ischemic changes most likely" they said and no further testing is necessary. My headaches are at the base of my skull and behind my eyes and 1 to 5 days out of the week. When they say "it's all in your head" that's literally true lol. Constant pain in the head and neck makes living life everyday a struggle and I'm so glad to hear that you were able to find the cause! This gives me hope that I desperately lack due to doctors insisting that my bloodwork and scans prove that there's nothing wrong. I'm going to look into finding some kind of vascular specialist to see if that might be what's going on. Thank you for sharing this!

Thank you for making this video

I cannot imagine what it is like for children - but I am almost 50, and I get teased by adults constantly. I was finally diagnosed 6 years ago with Marfan syndrome and hypermobile EDS. After decades of trying to find out what was "wrong with me". I have heard adults say, people with marfan syndrome cannot have kids. Or that Marfan is not a disability. Or in some cases, Marfan does not exsist at all. Would you believe that some of these people have been doctors ? When the hospital lists me as priority over other people in the emergency waiting room - people get so mad that I get to be seen before them/when they have waited longer than me. I stay at home most days, and I receive a disability pension. I struggle with digestion, circulation, brain fog, seeing double, dural ectasia, my joints are killing me. I had a blood clot years ago in my juggular. The affected arm gets bad some days. The blood just does not go through easy. It is my juggular, so i have pressure in my head like you would not believe. sorry for the long message. Just sick of adults teasing me. I am probably not the only one.

Love your videos Katie. I was just diagnosed with EDS as well, and your videos have definitely helped me process everything. You seem like you'd make a great friend!

Thank you for sharing so others of us can spot signs, and for your positivity. I have been told I have EDS3 but after waking one day and having the room spinning any time I tried to get up, making my eyes dart side to side, I felt something was off. It resolved after about 5 hours. About a year later I had this intense attack of double vision where my eyes could see fine individually but not converge. Eventually I was sent for a CTA which confirmed a looped internal carotid on the right side and torturous internal carotid on the left side. Since then I get stabbing pains that aren’t very severe or deep aching in the internal carotid pathway and also hear whooshing in that ear when standing and sometimes bad head pressure. I also get pain behind that eye. But given the CTA showed no dissection, I’m not sure what else to do/if the spinning was related?

Thank you so much for this information! I’m doing it right now! I have been told I have hEDS-but recently developed new vascular problems and seem to hit walls with all my questions. I live in MI and I can’t seem to get into a geneticist….Im willing to travel if anyone has some good eds geneticist recommendations

Please and thank you Did you ever have any face numbness at all? Or your eyebrow kind of lowering on it's own?

Are Your eyes grey or grey blue? Apparently grey is as rare as green and related to collagen. Mine are although I have central heterochromatic eyes and the exterior darker ring. 😂 I’m so see through too, translucent, people joke around like, get my sunnies, cos I’m so pale. I have been told my genetic test should be back by October and that’s fitting seeing it’s veds action month. Also Katie I found peer review article discussing a study on people who have varicose veins, which apparently shows that each person with varicose veins had dysregulation in collagen type three and type one. A slight rise in type one and a decrease in type three collagen levels in fibroblasts and venous smooth muscle. It even mentions veds in the article. Pretty sure it’s from 2001/2002 but it’s been a wow moment for me seeing this study.

Hi Katie, I’ve got a question or two for you. Would you consider almost gallbladder or appendix ruptures as suspicious for EDS hollow organ ruptures? My uncle died at 4 years and my brother almost died when a baby due to bowel rupture. I’m wondering if I could have a version of EDS, so know I’m questioning all family health stuff. I have a long wait for a genetic test and it’s driving me nuts. I check off symptoms for like 4 or 5 versions of EDS. They all scare me, but nothing like vEDS. TIA - Tammy