Відео

Thank you so much for sharing your story. You are a wonderful speaker. I would like to mention that maybe your son could be prescribed Metoprolol instead. I've been taking it a few years now since I was diagnosed with an aneurysm. It's not the same but it's pretty similar chemically and Dr. Shalhub suggested it as an alternative.

Hello, i have been diagnosed with EDS in the past but I'm worried i have Veds. i had to have open heart surgery last year and I'm having another heart operation this year (Ablation) i asked to be tested for Veds and they said you cannot genetically test for EDS at all. so instead they are testing me for Marfans. if they cant/wont genetically test for Veds and my doctor keeps brushing me off how do i confirm a diagnoses

Thanks for sharing ❤

What are your thoughts on ifuse surgery?

Thank you for sharing this story. It means so much.

Eu comentei essas mesmos Sintomas com uma médica hoje e ela me disse que é porque sou sensível e delicada. O Brasil é muito atrasado em questões a Síndromes Raras, estou a 15 anos tentando descobrir o que há de errado com meu corpo pra ter tantos sintomas diferentes. É muito bom ver pacientes que possuem síndromes raras falar delas, porque isso faz com que nós que não temos acesso a uma medicina mais preparada e nem acesso a um médico que se interesse por seu caso tenha chance de ter uma vida melhor por achar um diagnóstico.

Hey Katie, watching your video from Brazil, I have the the same problem since I was born, i never knew exactly what it is, because I never went to a Doctor for this, but now with your video I suspect I probably have the same problem, but okay, I live with my hands a long time and now it don’t bother me more, I learned to like it. Thanks for sharing your history, it’s too important to me realize that I’m not alone in this condition

Did you have any symptoms before it all happened?

Extremely informative.. What a very lucky woman to have survived childbirth and then the dissection with aneurysm for two years; wow!

What causes spleen ruptured was she hit by car or weapon how does this happen

You're honestly a warrior!

Thank you for spreading awareness!! So important! You're so cute,I love love love your nose :)

Pray that this is spread all over to help them help us

I saw the title and said to myself no it’s too much, I know I have EDS and that’s enough for me, I don’t want to know more about the types but I watched it any way and now I’m like🤕🤕🤕

O wow beautiful🎉! mine aren’t as spidery! More green and long - but my skin is a lot more translucent! .. used to feel so self conscious and fake tanned every week in my 20’s, but now at 32 I love it 💜

I have TOS and otber conpression disorders as well as POts, Cfs fibro etc and now testing for eds as im concerned surgery may make things worse if have it with u diagnosed EDS

Thank you for sharing your story.

I found your videos several years back after my brother passed due to complications from an intestinal rupture. Nobody ever could figure out what caused it and why they couldn’t repair it, but after I did research I found out about vEDS and your videos. In 2020 I ended up having a rupture of my ileum portion of my intestine. I’ve had pneumothoraxes and hemoptysis on several occasions between 2014 and now that they attribute to pulmonary endometriosis, but I am starting to think it is likely caused by VEDS. I am also on spironolactone for hair loss, which my brother also experienced. I had a genetic test ordered back in 2020 after my ileum rupture but it was mixed up in Invitaes lab, and now I can’t get anybody else to order it.

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I reckon your'e very pretty and your nose and eyes a lovely. Not trying to sound cheesy. The veins is actually something allot of people would like to have especially in the fitness industry, because it brings out more definition. Glad things are going better for you.

I went on a bunch of roller-coasters is what happned to me.I have chiari malformation so i shouldn't have been on them to begin with.Half of my ear is pins and needles.I have numbness down part of left side of face and under lip by chin.I never had it before the roller coasters.The doctor says i need a 2nd ct scam of the arteries to see if there is a dissection .He suspects there is.

I have the neck artery pain. It comes on suddenly and it’s tremendously painful. I also have the TMI’s. I had a complete ascending aortic dissection at age 58. I knew since I was young that something was wrong with me. I wasn’t diagnosed until I had my aortic dissection.

Is the mentioned research study for Veds VUS only?

This was very interesting. I am pathogenic for vEDS COL3A1 and have an VUS in Marfans FBN1 catagory. I am very curious about the Marfans VUS.

Thank you for Staying Connected podcasts. It is valuable to hear others voices.

I am 62 years old with chronic pain; low back issues, and severe neck pain. I cannot touch the area of my neck where my carotid artery is without discomfort on my right side, which is where my neck pain is. I am very hyper mobile and I feel like I have traveling pain. It can be my knees, my back, my neck, etc. I have more headaches than I used to get and I get these artery pops in my fingers and toes 2 - 3 times a week, (which appears to be diagnosed online as "blue finger") no one can figure out what it is from; I worry that these artery pops could happen in my brain and cause an aneurysm . I have been to a cardiologist, a vascular specialist and I often feel like they look at me like I have two heads. I am very fatigued all the time but I have lived with an eating disorder for 40 years and attribute almost everything to that. I have very thin skin and it looks like you could use my body to draw a road map across county on it. Is it possible I have some form of EDS?

not to take anything away from what happened to you, I had this as well back in June last year was in hospital for over a month, I was only recently diagnosed with veds June this year. You explained this so well. We can do this, stay strong 💪 💪

What dr should we see to consult if we have EDS or VEDS?

Yes the middle layer the blood brain barrier ?

Hi, did you experience ear popping all the time?

7:53 Oh yeah thin skin stopped in its tracks with shilijat. Thanks for your knowledge of rare conditions. Kinda amazing YT is actually trying to hurt you. Deleting comments its like they dont approve of YT health survivor channels

Hope you see this they're taking it down repeatedly. Get screened for Tarlov cyst by board certified nuerolgist

The injections protocol aren't the usual ones. In my case treating radiculopathy in the sacrum and the brachial plexus as you probably might know. The center of sensory nerve activity. Allopathic medicine really dropped the ball this not being standard practices. 9:18

If they find Tarlov? It's treatable easily with injections. Treatment might eliminate any pain you have as well. Did for me I have fibromyalgia

I see YT won't allow you to be informed about getting screened by nuerolgy for Tarlov cyst. It'll show on MRI. Unfortunately the MRI technique isn't known by most physicians . Board certified nuerolgist is recommended to overcome this fact. Super informative channel channel here congratulations

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

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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.