My VEDS Characteristics and Diagnosis Story - My Life with VEDS (Vascular Ehlers-Danlos syndrome)

Someone asked me to do a video with my VEDS symptoms and diagnosis story. I figured it has been a good while since I have done this, so here it is!

[@dbeazrn3934]

As a RN, 15+ years, your story touched me as I teach ALL of my nurses to listen to the patient, who exhibits symptoms especially, when one tells you “something isn’t right.” Sometimes, it’s a family member that notices something that’s “just not right” with their spouse, parent, sibling or child....LISTEN. I was so frustrated with you being sent home from the ED 4-5x after going there with severe headaches & learning that no additional testing, not even a neuroconsult, was completed. I’m so sorry that you had to experience more pain until you were properly diagnosed. I’ve never cared for a patient with vEDS, or any type of EDS. I was watching a puppy (w. a cleft lip) video & towards the end, the young lady stated that her puppy grew into a type of therapy dog for her. She stated that suffered bouts of severe pain related to EDS. Embarrassingly, I had never heard of this & wanted to learn, first, from a person who had been diagnosed. Thank you sooooo much for teaching a “middle-aged” dog (LOL) something new. Now, I’ll research it more & look for an inservice. Blessings to you young lady for being so well-informed & such an awesome advocate for those living with any form of EDS. I’ll be sure to share your video with other nurses.....maybe I’ll even send some education to a MD or two. 😌 May God bless you with HIS strength to keep moving forward, one day at a time. Prayers. ❤️🙏🏼❤️

[@TranslucentOne]

thank you so much for this

[@stefanallard3084]

"Feeling isent right" you mean magnesium n potassium deficancy.....

[@Truerealism747]

​@@stefanallard3084do you have heds or veds

[@JenniferShipleyArt]

Thank u. I am getting tested for veds at next hematology apt if my insurance cooperates but yeah, when you have a complicated medical history, what is so frustrating is how hard it is to find a doctor that can grasp even 20% of it in the very short amount of time and attention they are able to give your case. And when someone gets it 98% wrong because they were overwhelmed and didn’t take notes during the appointment, whatever their bad memory permits them to document is what ends up in your medical file to then mislead all future doctors who rely on that instead of what they should be learning by examining and listening to their patients. And don’t get me started on how medical insurance companies prevent adequate testing and optimal treatment. The system is broken, particularly for anyone with conditions that stray from the well-beaten path. I can tell by how knowledgeable you are about your own medical conditions and those that have been suspected in your past, just how long and difficult your journey has been. I hope now that you have a diagnosis you are able to spend more of your time and energy on the things you love and less on what other people chose as their profession. I have endless love and respect for you and your immense strength and determination. ♥️♥️♥️♥️♥️ YOU figured it out! Something people get doctorates to do! That’s incredible!

[@TranslucentOne]

Thank you!! Wishing you the best at your hematology appointment. If you have trouble getting a test you could also try reaching out to FightVEDS.org for testing or to theVEDSmovement.org for knowledgeable geneticists and cardiologists ❤️

[@debbiemoody6559]

This brings back all the memories of when you were here. I remember the day you got your diagnosis. I love you. So glad you got the diagnosis so you knew what you were dealing with. Keep telling your story.

[@TranslucentOne]

I love you. Thank you

[@wren1996]

I am shocked having just looked up elastosis perforans serpiginosa, I’m very certain I’ve had this twice. I also thought it was ringworm or allergies as I have have lots of skin reactions. Nothing would get rid of it and eventually it resolved itself both times. I am pretty sure I have heds, but don’t quite fit the criteria. Thank you for sharing your story. I’m sorry it took so long to diagnose, even though the symptoms where there :( sadly, we have to keep pushing when we have these gut feelings about our health, but it’s not a good experience to keep being ignored. ❤

[@Bonnieerina]

It's funny because I was just scrolling through Facebook and not really paying much attention when I saw you and thought, "wow, this girl has VEDS." So, I paused to look who was sharing your video and what your video was about when I saw it was Annabell's Challenge that shared it. It slays me every time I hear another person was told they couldn't possibly have VEDS because of its rarity. So many times, I was sent home from the ER. So many times, I was told to look into anxiety and depression. I went years with issues before finally being diagnosed. I had hips dislocating, coughing up blood, GI issues, varicose veins, and so much more but it took my aorta dissecting and almost rupturing. Like you, I went to work anyway because I knew I'd be sent home. My boss was scared and insisted I go to the ER. That night I was in ICU being stabilized for an open aorta repair the following morning. After scans, my body was full of aneurysms. My vascular surgeon put the pieces together and a geneticist confirmed it with a blood test. Like you, the diagnosis has been bittersweet. I realized why I had suffered for years. All the ill-treatment by doctors, the bullying as a child for my big eyes, strange nose, and clumsiness. All the times I beat up on myself for not being able to workout like others because of the pain and injuries. The sadness when I realized that I got the VEDS from my mom and how she died from a ruptured aneurysm in her brain at 52. That my grandmother, her mom, died from her heart rupturing at 53. They both had the characteristics and no answers when they begged for help. I passed it on to my son. Last year we we were in the ER after he collapsed after complaining about chest pain while cooking breakfast for my husband on Father's Day. The doctor argued with me and I mean outright insisted there was no way he could have VEDS. Even as I sat there trying to keep my cool and explained he tested positive with a blood test by the geneticist. He wouldn't do scans, just said he was dehydrated and sent us home. There is so much ignorance still about this syndrome. Videos like yours are so important. I wish you health, healing, and wisdom on your journey, Katie.

[@TranslucentOne]

Wow what an incredible amount you have been through!

[@debbiemoody6559]

Wow that is crazy. My almost 2 year old granddaughter was just diagnosed. While I am terrified, I realize it is great they going it early. Knowing what Katie went through, and hearing your story, makes me thankful someone actually listened to my daughter. It still took some and a lot of getting told she was just small and clumsy... infuriating. My granddaughter's physician even wrote my daughter and email..."just saw Lucy's report, you were right" Really, that's it? No apology for making us all feel like we were crazy! I am grateful to know Katie and being there for her when she got her confirmed diagnosis...it was tough, but she is tougher! She's a great advocate and has loads of info!

[@Bonnieerina]

I’m so happy to hear your granddaughter has been diagnosed early. My mom didn’t know anything was wrong with me because she most likely had it. She died at 52 from a brain aneurysm, but also had all the symptoms. After my diagnosis, my children were tested and my son has it. When he was little, I kept bringing him in for the bruising and headaches and constant sprains and fractures. He even tore his ACL tendon just playing on his scooter and I was always told he’s just a “boy” and not to worry. That’s why I really hope doctors will start learning about this. After my aorta did it’s thing, I ended up in and out of the hospital seventeen times in the last five years. I’ve used the opportunity to teach all the student doctors and nurses everything I can. Maybe that’s what it will take-for those of us with VEDS in the family to be a grassroots movement. Best of luck to your sweet grand baby. ❤️

[@kbellmurray]

I’m kind of surprised that they missed the diagnosis at first! I have HEDS. Watching this out of interest. Glad you survived all of that!

[@TranslucentOne]

Thank you! Me too!!!

[@erintreesemarketing]

Thank you so much for making this! Working on getting my gene testing right now. My doctor thinks it vEDS or cvEDS. Please keep sharing.

[@jilliangreen8435]

I have been waiting to get into he geneticist for months. Big heart back to you, thanks for sharing

[@TranslucentOne]

That is so frustrating to be on that waiting list!

[@macgirl1234]

Thank you for sharing your story! It's amazing how many of us with EDS have the same experiences with doctors brushing off our symptoms! I'm so glad you have your Dx now.

[@TranslucentOne]

Thank you! 😊

[@theseagulls7035]

My 19 year old granddaughter and her mum have vEDS. Thank you for explaining it so much better to me. Stay well.

[@ZijnShayatanica]

I have a hEDS phenotype but a mutation on COL3A1, so I have a few characteristics. A couple ministrokes, translucent skin, varicose veins, etc. Not enough to be classified as such, but it's prudent to be on the lookout for something serious as I get older. I love your channel - - you really open up a dialog for people who really need it. Over the years, I feel like between your help & others, vEDS will have good representation like hEDS does! It amazes me that you were do easily dismissed - - but I'd have loved to seen that geneticist's face when you tested positive!! Lmfao.

[@TranslucentOne]

I would have loved to see the geneticist face too! LOL The positive comments mean a lot to me- thank you so much! We are definitely heading in the right direction with the vEDS Collaborative. There a lot of amazing groups working together now and it feels like the representation is building. :) So your mutation on COL3A1 was not pathogenic?

[@ZijnShayatanica]

You're welcome!! :D And yeah, it's "likely not pathenogenic" or something. I haven't really had it discussed with me but my sister's team in France is studying the variant personally. The genetic mysteries of EDS are always interesting :P

[@Texmatt21]

It’s so sad how full the internet is of seriously I’ll people being completely blown off by their doctors. I don’t have EDS, but I do have celiac. After years of my depression, joint/nerve pain, and brain fog being dismissed by doctors, I finally had to beg to get a genetic test for celiac. The doctor asked me “does your tummy hurt?” In the most condescending manner possible. No…But I have all of these other symptoms that get worsen after ingesting gluten. “Well if it’ll make you feel better, we’ll get you tested” A week later I got a call from a dietician, “Hi, I’m here to talk to you about your celiac” 😮 I never heard from that original doctor again. Now my gf is going through the same thing with what we suspect is EDS. I’m getting really tired of doctors telling us what we feel isn’t real.

[@flowerfairy9422]

Thank you so much for your video and sharing your experience, I am still in medical wandering and I am 58! I have a lot of EDS criteria, after vein treatment, I will go for genetic testing....Keep sharing, you are a beautiful brave soul, you are an inspiration, with much love and many blessings...💜🌻💜

[@Oscar-kj8pb]

I wanna thank you for making this video, I got diagnosed with vEDS last year after an arterie rupture at the spleen and i luckily survived that and ever since that is has been a lot! It really helps me to relate to a lot of stuff you are saying and I don’t feel like I’m the only one with these type of problems! Keep staying strong and thank you again :)

[@TranslucentOne]

❤️

[@thePhoenixxx1983]

Katie thank you ever so much for your super helpful video. I truly appreciate the way that you explain Medical things even if they are complex it is very assistive that you are so relatable with the medical to helping others be aware of this condition. I also have EDS and I'm quite sure it is not regular hypermobile type even though that his the primary diagnosis I have been given. Mine is severely delayed I have been in the ICU two times and doctors have been very lacking even in just having explanation of what they did know and having open conversation and communication like you are here. I appreciate this ever so much and I've subscribed and have planned to keep tuned into your Channel for your quality medical vascular Ehlers Danlos geared content. Thanks very much. Side note my wellness is so low it has taken me several viewings to get through your video even though it is not long and the fact that I even remember to come back is a true blessing what I have been through and a sign of change which I am thankful for. You're keeping me hopeful Katie thank you so much.💖💖⭐

[@thetedster7812]

Amazing girl, proud of your pragmatic attitude, humour and grace - no other words.

[@thetedster7812]

Actually yes... Beautiful too, never mind "the characteristics!"

[@TranslucentOne]

thank you!! :)

[@SarahGerster]

Thank you very much. I can't believe that I just watched my story as you told it!! My goodness. I feel so alone, watching you just made me feel a bit better. Thank you again for taking time to do this. Gentle hugs

[@TranslucentOne]

I’m glad this helped you feel less alone! When were you diagnosed with vEDS?

[@SarahGerster]

@@TranslucentOne I'm waiting for my genetic tests to come back. However I've been going through my history and it's very scary to see the problems I've had and no answers. Ny health s getting worse in some ways, this has just opened my eyes to see how much I need to take total control of my health and be (nicely) more assertive, especially when it comes to my dissection and some other bleeding issues. Thank you so very much again!! Gentle hugs =)

[@IrishTequila]

I have all these symptoms. I’ve been misdiagnosed so many time. You just made me think I now have a pacemaker. And it’s in that aria it there’s a lot of pressure sometimes. What kind of doctor can diagnosis. Thank you so much for this video and bringing awareness. You are such a warrior!!!

[@TranslucentOne]

Thank you! A geneticist made the diagnosis for me. I hope you don’t have this but know if you do there’s great support now with thevedsmovement.org!

[@heatherchappell192]

Thank you so much for this video❤ I am currently awaiting for testing for veds and after looking through the symptoms checklist I realize I have 9 out of the 12 basic symptoms. Last year I experienced the exact same pain in my neck! I basically woke up with it one morning and had xrays from the chiropractor which didn't show anything. Its scary to think that this could be potentially dangerous and is commonly looked over as a strain or pulled muscle. Goes to show that we have to active advocates in our own health! I will be mentioning this to my specialist for sure. Thank you so much again, all the best to your health and journey xx

[@TranslucentOne]

I hope you get answers you need and I hope that neck pain isn't an artery dissection like mine was! So scary when things like this are looked over for sure. Best wishes as you await testing for VEDS too

[@kmdn1]

When you say youre head felt like its going to fall off I understand completely. i remember going to work with severe neck pain and telling my coworker friend "it sounds crazy but my head feels like it could literally fall off." and i wasnt exaggerating that was just the best way for me to explain it- turns out i have cerival instability so it makes sense that i felt that way!

[@Truerealism747]

Have you found any pain relief I have heds fybromyalgia mainly constant shoulders area but no headaches nowadays though feels like it in shoulders

[@Colin1084]

Thanks so much for sharing. My wife is going through the process of getting diagnosed with veds, it has been a long and tedious process. She is in constant pain and is really difficult for her. Thankfully her PT knew what eds was and let her know she should get checked because otherwise we would have never found out. It’s an uncommon disease that many doctors don’t even know about which is why it goes undiagnosed so often. Thanks again for hr great video.

[@TranslucentOne]

I’m sorry you guys are going through this! I hope you get an answer soon. Let me know if she comes back positive and you need some support!

[@philtroskey7942]

Love hearing your story I didn’t get diagnosed until I was 38 now I’m 43 and I have Pseudo aneurysm’s in both my carotid arteries but thank God I never had the pains that you had. God bless and congratulations on the wedding

[@TranslucentOne]

Grateful you didn’t have that experience! Glad you found me 😊

[@ShotgunAndAShovel]

Thank you so much.

[@Holly-sq5uv]

I am shocked ( but not shocked) that The geneticist missed your diagnosis in 2013. I went back to try to figure out how that happened: 5:27 So, am I correct in that the geneticist did not even test you after your referral suggestive of Ehlers Danlos? And, when *actually tested* in 2017, you tested positive? I commend all of you for hanging in there. It can be so exhausting and depleting trying to continue to fight to be heard, understood and to have one’s issues seriously addressed. The indifference and apathy of some members of the medical community is really tough to fight. I always ask myself what their demeanor and follow-through would be like were the issues concerning a beloved family member of theirs. I think they would be very prudent and proactive.

[@TranslucentOne]

Sorry for the late response on this- That is exactly what happened. I saw her with concerns for EDS, and I was personally concerned about the vascular type. She asked all about my medical history and tested me with the Beighton scale as well, then told me I did not meet the criteria for any form of EDS. I then asked again about the vascular type and she told me no one had that and I didn't need to worry about it. No testing was warranted according to her. 3 years later I got a genetic test and tested positive.

[@melissafarrugia9531]

It’s just unacceptable, ignoring medical indications that involve duty of care as a physician! It’s actually pathetic literally.

[@peppapotato]

Thank you so much for sharing ❤️

[@hissonggirlmoni5706]

I wanted to understand what veds was better because a friend said he suffered from it but I really didn’t want to be intrusive. He had explained somewhat but I still had questions. I, myself was born with a progressive degenerative joint disease so it causes chronic pain. I was blessed to have been able to be diagnosed at a young age. I listened to you in tears for having to fight to find a correct diagnosis. I may not know you but I was so proud of the fact that you became your own advocate and fought the good fight to finally get the correct diagnosis. I believe recording your story will help those that don’t know what they have. Thank you for your willingness to share.

[@TranslucentOne]

Thank you so much for this really sweet comment ❤️ I wish the best for you with what you are dealing with and also wish all the best for your friend who has VEDS. All the love. ❤️

[@Truerealism747]

What condition came with it

[@sierra6293]

I have GHSD or pretty much just undiagnosed hEDS. I didn't know much about this type so this helped.

[@lindamariemartinez6406]

Thanks for posting your video!❤ I started to feel like I was dying in 2019 and my doctors told me I was fine. They said it was just anxiety. I knew they were wrong and I started trying alternative medicine. Acupuncture, liver cleanses, coffee enemas, organ meat supplements, sunlight therapy, infrared saunas, yoga, Qi Gong, all organic diet, homeopathy, high doses of iodine, wheatgrass shots, supplements, EFT tapping, and IFS therapy all helped. I hit a deer last year and I got a lot sicker. 2 months ago, I realized I had every symptom of Vascular Ehlers-danlos. My new doctor agreed and we're trying to get genetic testing. The geneticist she referred me to rejected me as a patient because she said my case was too complicated and she didn't treat many patients with EDS. So now I'm waiting a month to see a cardiologist who my doctor said can order me a genetic test. I'm still in shock that I'm very close to death. But it makes so much sense. I have translucent skin, very prominent veins, poor wound healing, chronic fatigue, bad digestion, insomnia, massive pain in my joints, POTs, trouble thinking, and old looking hands and feet. It's really isolating to have such a rare disease. Thanks for sharing your story! I discovered I had the symptoms of EDS from reading a Bored Panda article about genetic diseases. I saw a picture of the model that has EDS and I realized my skin looked like hers.

[@TranslucentOne]

Wishing you the best for that cardiology appointment and hope you get the answers you need soon ❤️

[@R.Percival]

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.

[@TranslucentOne]

Sending so much love to you and your family. ❤️ hope you’ve been connected with others with VEDS!

[@alexisgildore444]

Hey Katie! Just subscribed ❤

[@tudormiller887]

Hi Katie. I'm a brand new subscriber watching from London UK. ❤

[@TranslucentOne]

Welcome!! 🤗

[@michellefurtner2815]

U poor girl , I have h- EDS I’m sorry I had such a horrible time getting diagnosed I also have Fowlers syndrome and that took 29 hrs to get diagnosed It’s always a fight and getting sent away from the hospital Im glad u got ur self diagnosed and now u can manage it

[@BrianSmith-jx7td]

I appreciate you making this video I am terrified I have this since I found out I have hyper mobility in my joints and I have stretchy skin

[@TranslucentOne]

Hey Brian! Check out thevedsmovement.org for more information about VEDS and to find a doctor to be evaluated. Hope you don’t have it!!

[@Christinesobsevations]

Thank you for sharing ❤❤❤

[@cosmicalchemist8219]

I’ve got thumbs, skin, eyes, hyper mobility, aging hands & feet, like you. Also see through skin, & almond shaped eyes. I’m seeking a proper diagnosis. Thanks for sharing your symptoms & experience. I’ve also had the chronic rash.

[@TranslucentOne]

I hope you get the answers you need ❤️❤️❤️

[@rebeccaanderson810]

Excellent information! Thanks for sharing your story.

[@TranslucentOne]

Thanks for watching and glad it was helpful!

[@mungbean345]

I was never a healthy kid, but I've been dramatically ill since I was a teen and getting worse every day. I've been to over 50 doctors in the following 20 years and they've certainly found plenty of things wrong, and offered some treatments that made things easier for a while. Now, things have started to decline rapidly again, and I just keep thinking about EDS-mostly so that I can be better informed about the aftercare healing prognosis if doctors ever want to do another surgery or anything like that-and wondering why no one has ever mentioned EDS, much less suggested testing for it. So I started looking into it last night... And was mostly shocked to see that there are linked facial features and person after person looks like me and my family. After being a mystery for so many years and getting tired of hearing "it's just a panic attack" or "go home and drink some water" from ER visits (when really I'm just relatively chill because I'm so used to being in agony!), it is a little eerie to see obvious visible exterior characteristics that match my life. ... Like, how did we not look into this while we were literally looking AT this?! I guess I'm going to start looking into a geneticist now after I thought I had exhausted all possibilities. Thank you for speaking candidly about your situation AND sharing that your first geneticist got it WRONG. I wondered if they had magical answers since they're sitting there with the DNA or if it was kind of the same as any other specialist, so that's a really helpful perspective to go in with. Overall, I'm really thankful for the struggles I've dealt with because of the growth I've experienced and that it helps me be more compassionate toward others than I used to be. So I don't want to come off as a total whiner. But it would be nice to have a little vindication and information about what I can expect. I'm stoked you mentioned your carotid issues, too, as I've had something extra weird happening in that region for me. Anyway, it's one of those times where I wish you didn't have anything in common with me which would likely mean that you'd be healthier and more comfortable, but I'm also thankful that you have commonalities, because you've taught me a lot just in this one older video! It's greatly appreciated!

[@katyaarbuzova4515]

Hi Katie! Thank you for the video! Have you ever had a joint pain or inflammations in your fingers because of hypermobility?

[@TranslucentOne]

I get joint paint in my fingers when it is cold. Really the most painful things about my fingers is when I try to use them for things that require pressure- like using a can opener.

[@emilysadventures9165]

Very interesting! Thank you for sharing. I know I have EDS, but I haven't talked to a doctor about it yet, and I don't know what type I have. I have very sensitive skin, and I can see some veins through my skin, but not as much as yours. I'm hypermobile all throughout my body and I have varicose veins even though I'm young. How do you get diagnosed; do you just ask your doctor for a genetic test? Or did you have to see a specialist? Many doctors have downplayed my symptoms, too, and not believed me about certain things, such as having an ulcer--I felt a burning pain in my esophagus after having a pill stuck in my throat, and I knew it was an ulcer, but I was told it was anxiety, just like before when I went to the ER having a severe allergic reaction (I'm pretty sure I have Mast Cell Activation Disorder, too) and when I went to the ER because I had a pill stuck in my throat that was irritating a nerve and causing my body to go numb. I have constant daily pain from Pelvic Congestion Syndrome. I wish I could get diagnosed and find out exactly what's wrong...but I wouldn't expect my doctor to take me seriously if I told him I have EDS.

[@TranslucentOne]

Hey Emily! I had a hard time getting a doctor to order a test. I would recommend either going through color.com or fightveds.org. Fightveds.org has a testing program where they work with people to get the right testing ordered. Both of those sites are valid ways to get testing without necessarily going through your primary care provider. Dismissal is the worst feeling. :(

[@melissafarrugia9531]

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..

[@9sunsjuddleponk]

My symptoms are way to similar to yours. Im really scared. :,(

[@TranslucentOne]

Have you seen a doctor or had any major events? I totally get that fear. Hang in there.

[@juliefarrell3957]

I even had the false ringworms

[@shannongreenwell1278]

My middle nephew has translucent skin, and his veins are visible . My sister needs to get him tested. I am praying for a cure for EDS especially this type.

[@TranslucentOne]

Cheers for a cure 🤞🏼❤️

[@kimbagirl68]

Hi Translucent One, Im in Australia and have vEDS. Ive had a uterine rupture, a bowel rupture and a multiple organ bleed causing my spleen to be removed. The most recent incident Ive had was last Monday when I tripped over a speed bump lost my balance and my shoulder subluxed. It sure isn't any fun at all having this syndrome! Gentle hugs to you!

[@TranslucentOne]

Hey Kim! I’m glad you found my channel! I know another person out there in Australia with vEDS. Do you already know anyone else there? Feel free to email me. [e-mail]

[@drueboy333]

I love that you can snap!

[@kurtgillis1434]

Hey Katie, I always hear about the small joint hyper mobility with vEDS , does that mean you can’t hyperextend your knees and elbows? Also I have the translucent skin like you, but I don’t have the facial features or easily breakable skin( at least I don’t think it is) do you know if translucent skin is common in other types ?

[@TranslucentOne]

Hey Kurt! Yes. That’s exactly what it means! I am also hypermobile in one shoulder and maybe VERY mildly in the elbows. I know some people who are also extra bendy in their knees, but it typically isn’t to the extent that someone with hEDS or cEDS is. Translucent skin is also present in the periodontal type of EDS and in Loeys Dietz Syndrome. I’m not sure if it’s as common in the other forms of EDS

[@TranslucentOne]

Not everyone has the characteristic appearance. I’ve heard doctors say that some people you wouldn’t know without the genetic test

[@RD-jz5bw]

Classical eds- I have thin fragile translucent skin and false ringworm (my daughter also does from psoriasis-harolds patches)

[@jonny61harrington]

Really good info. I'm a 58 year old guy with Veds living in UK. Under great Dr at UCH in London. A lot of your story resonates with mine. Good luck, and take care.

[@jonny61harrington]

@@TranslucentOne Great information. I have Veds , diagnosed 11 years ago after my sister got I'll. Sadly she passed away 5 years ago, but I'm still here, and am a old boy of 58 , so there is hope. I'm under Dr Kaz Kaz at UCH in London. Hope your doing well, Jonny.

[@teresareinert8271]

I have spinal issues and I have that sudden pain in my neck that I’ve called a Charlie horse like pain. I wonder if it’s something like yours. I’m waiting on my geneticist appointment for Veds. My veins breaks when they sedate me and I’ve woke during surgery because of it.

[@TranslucentOne]

I’ll be hoping the best for your geneticist appointment and also hope that you get some answers for that pain ❤️

[@curtisbemis6640]

I have to watch this since I have veds

[@TranslucentOne]

Glad you reached out. Have you connected with community yet? We have a wonderful community on Facebook. The VEDS Movement also has great info and support resources at thevedsmovement.org ❤️

[@curtisbemis6640]

@@TranslucentOne thank you and I will definitely check it out 🙏🙏

[@jenniferruble4593]

Do you have to test positive for vEDS? I have had two dissections in both vertebral arteries but they tested me for vEDS and it was negative but tested positive for another varient of EDS. but only one gene...not two as the geneticist insists you must have two of the same gene to have EDS. Still don't know why they happened.

[@TranslucentOne]

Hey Jennifer! I’m not as familiar with the inheritance patterns of other types of EDS. I’m sorry I can’t be more help and sorry you are going through this! There’s a nurse in the Help and Resource Center at The VEDS Movement who might be able to help you navigate this as you look for some answers. She’s reachable at Thevedsmovement.org/ask

[@james____brooks]

you’re beautiful!

[@TranslucentOne]

Thank you! :)

[@AlexandraShilling]

I’m confused about the first geneticist you saw. Did they not do the test properly?

[@TranslucentOne]

The first geneticist ruled out all forms of EDS without doing any genetic testing, even though I had the minor features consistent with VEDS. That’s how the diagnosis was missed. Hope this helps!

[@melissafarrugia9531]

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.

[@TranslucentOne]

Hope your genetic test gives you the answers you need! My eyes are green/hazel

[@melissafarrugia9531]

@@TranslucentOne Thanks Katie , I really think it’s going to be way I will find answers, I really appreciate all your uploads and it’s reassuring to find the information you provide, the community benefits so immensely and is so blessed to have you, regardless of my results. Without Your efforts and the efforts of others with eDS I would never have had a clue what I experience could be connective tissue syndrome. My deepest thanks, my Brother has green/hazel eyes, my cousin true green, I suspect that they also will eventually get tested, as they both display the symptoms too. I am beginning to wonder if eyes speak eDS quite loudly in general like eye colour, astigmatism, blepharitis, and the freaky block curtain in one eye, photospia I’m experiencing etc… not just almond shape, but things like exceedingly long lashes etc

[@Izzy19833]

Hi I just come a cross your channel i have VEDS and came with talipes too

[@TranslucentOne]

Hi! Glad you found the channel! Are you connected with others in the VEDS community? There’s a large community over at The VEDS Movement

[@Izzy19833]

@@TranslucentOne yes I’m with a group in the uk 🇬🇧

[@kimberblentlinger613]

My daughter and three grandchildren have VEDs..

[@TranslucentOne]

Sending you all the love ❤️

[@kimberblentlinger613]

@@TranslucentOne when she was little she bruised easily..She was my only child so I didn't have other children to compare her with. I thought she may have a blood cancer and had her tested. It came back negative. So I thought I was just a overprotective momma. She always seemed more fragile than her cousins. When she was older and had her 4 child she went in for a routine hernia surgery the second time and they almost killed her..Very scary and it was bad..They had to call in a vascular surgeon ..God guided his hands and saved her..It was and still is a long process for recovery ..But he said something was wrong..Her arteries and veins were like wet tissue paper. Of course I just thought he didn't want to be in trouble..But almost a year after her surgery we all had testing..She and 3/4 children have VEDs. I - her mother tested negative and her father who is remarried has not been tested.

[@stacy8717]

I stumbled upon A pic of Veds and boom. That's my skin. I have SUFFERED for years getting NO help frim medical community and my family tried for a while to understand but ended up making me feel shame and crazy.

[@TranslucentOne]

I’m so sorry you are going through this, Stacy! I hope you can find a doctor that can help.

[@lindajakub624]

So what can you do about it?

[@TranslucentOne]

Hi! Since I found out about VEDS, I am better prepared for emergencies, I was able to make some lifestyle changes to reduce risk, I can proactively manage my blood pressure, and I get scans every year to monitor for changes to my arteries, like new aneurysms and dissections.

[@jocelyntownsend5710]

The geneticist is an idiot. I'm sorry. I'm so angry which is likely inappropriate. So many professionals dismiss EDS because they don't know their shit. I'm sorry you went through so much.

[@TranslucentOne]

I think anger is a valid feeling. My hope is after missing my diagnosis that geneticist won't miss it in anyone else in the future. Thank you for watching

[@Erick.Huxler]

Can it be seen in CBC

[@TranslucentOne]

Hi Erick! There’s genetic testing to test for the mutations that cause VEDS. Hope this helps!

[@BLAZEDPKING]

I'm scared that I have this I'm so scared

[@TranslucentOne]

I am so sorry you are going through this! I remember that feeling. I am now the Director of The VEDS Movement, a new division of The Marfan Foundation. We have a registered nurse that can help you in our Help and Resource Center, and a support group for people awaiting diagnosis. Virtual support groups: thevedsmovement.org/resources-and-answers/virtual-support-groups/ Help and Resource Center: thevedsmovement.org/resources-and-answers/ask-a-question/

[@Keeperofloveys6]

I have the neck thing once a month and they won't test me...I have lordosis of the spine, scoliosis in lower, degenerative disc's lower back and cervical. But I don't have eds.... I puke and flare all the time for 30 Years and no help😅just few days ago, another wake me up to the world's worst headache and puking for 12 hrs til it stops. Times 99 rounds

[@TranslucentOne]

I’m so sorry you are going through this! I hope you find an answer.

[@Truerealism747]

I have heds awaiting genetic testing I have asperger's ADHD which is linked I have chronic pain thoracic outlet symptoms but say it's fybromyalgia I've had pelvic pain 26 years awaiting genetic testing at 43 just list my mum to severe ms heds asperger's no dint have the small nose at the moment what me diagnosed heds with marfanoid characteristics gerlins sign etc positive

[@krystlekorpi4188]

Sounds like me I'm pretty sure I have veds

[@TranslucentOne]

Hey Krystle! I hope you don’t, but know that if you do there is a growing community of others with it as well as medical professionals and researchers working to help people with VEDS ❤️

[@RochelleVanHeerden-st2pw]

So sick of the medical system messing people around

[@cottoncandyfriends8933]

Hello.. I am interested in what you have to say, but lol, I'm having trouble following you bkz you talk soooo fast. Would u please consider slowing down so some of us older folks can follow u plz? I'm not being sarcastic, honey, honestly!! TY for considering this. 😀 JESSIE

[@TranslucentOne]

LOL! I will try to slow down. Thank you for the feedback!

[@seitanbeatsyourmeat666]

Don’t you just love the dismissive attitude of doctors? The entire system is broken

[@TranslucentOne]

Definitely agree the system doesn’t work, especially for recognizing people with rare diseases. ❤️

[@chelseascott5872]

I dont mean to be rude but will you die from this?

[@TranslucentOne]

I don’t think it’s a rude question at all. It’s pretty likely that this will kill me one day. I just posted an emergencies associated with VEDS video yesterday that goes over all the spontaneous things I have to watch out for if you haven’t watched it yet. It’s a pretty scary thing to live with!

[@Truerealism747]

​@@TranslucentOneif your stress is really low then this may help the vein strength Dr hanscombe has have me hope do you have asperger's with it if dint mind me asking as I do does many your family have it must be other ways to strengthen the veins vitamins to

[@TranslucentOne]

Hi, I don’t have Asperger’s and no one else in my family has VEDS

[@Truerealism747]

​@@TranslucentOnethanks for reply. Can trace mine back to 1825 all have asperger's heds.maternal side

[@Truerealism747]

But being checked for other ones