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

This video is about my Vascular Ehlers-Danlos Syndrome (VEDS) characteristics and my diagnosis story. This is a remake of an older video :)

[@WaxPaper]

A friend of mine had EDS, I think it was this type. Her mom had it, so she'd known her entire life. I can't imagine finding out when you're an adult. It seems like it would be so much harder. Back when we were in college, my friend told me that she probably wouldn't make it to 40. I never truly accepted that -- I was just too young, the future seemed so far away, and she was just so full of life that I couldn't imagine her any other way. God, it's been almost 20 years now, since I first met her. To this day, it still amazes me how she was able to live her life, knowing there was a ticking clock. I mean, that's true for all of us, but she knew she didn't have as much time. And yet she still lived with a fire and intensity that just awed me. We spend so much time thinking about how we should live, what we should do with our lives, how we can best use the time we have... But there's no clearer example than the way she lived her life, hunting down every happy moment she could, embracing her friends and family. I didn't plan on writing an essay here, but man I miss her. It's been a while since I spoke her name to anyone out loud, or even wrote it down. I miss you every day, Crystal. I'm still trying to live just a fraction as well as you did.

[@TranslucentOne]

I’ve been searching for the words to respond to this comment and I haven’t found any that are good enough. Just want to send you the sincerest virtual hug. Your friend Crystal sounds like she was an amazing person. ❤️

[@PhoenixGoddess4444]

Sending you energy of comfort. The universe brought you here to this video to reflect and remember and have gratitude for your friend. I have hEDS, but was terrified for some years it could be vEDS. Fortunately as time has gone on, it’s not vEDS. my heart goes out to you TranslucentOne 💜🩵💜

[@violetblythe6912]

It's probably because she knew time was limited, that she was able to live so fully. Most of us feel like we've got all the time in the world and take the moment for granted.

[@greenthumb8266]

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.

[@erinancientelements]

Isn't needing to FIGHT for your health so much fun!!?🙄

[@Christinesobsevations]

It’s a full time job

[@teaganread6835]

​@@ChristinesobsevationsIt really is.

[@sandraferguson2774]

I got a phone call 6 years ago from my daughter’s friend and coworker asking me how many seizures my daughter had had before. She’d never had a seizure before. She was at work that night and didn’t feel well. She was sitting on a chair and her friend said her eyes started rolling up so she put her on the floor where she started having a seizure. She ended up on life support for a week in ICU. She’d had a Bilateral Vertebral Artery Dissection. It happened at the base of her brain stem. She had just turned 31 years old just over a month before. We found out from her autopsy that she had VEDS. We had never heard of this before and no one in my family or my husbands family have it. She did have the big eyes, the thin lips and translucent skin when she was little and she also slept with her eyes open a bit. She wasn’t sick before this happened and never had any neck pain like you did. It was all very sudden. Even the ICU doctor or the ones he was consulting with in Toronto couldn’t figure out what caused this or why it happened to such a young, healthy person. I don’t think many doctors are really aware of this condition. I miss her terribly every day.

[@TranslucentOne]

💔 I’m so sorry you lost your daughter, Amy, to this terrible condition. Sending you so much love. VEDS is so unpredictable and a horrible thing to deal with. ❤️ I hope one day we have a treatment that is proven to prevent things like this from happening to people with VEDS, but I know it will never bring back your beautiful daughter. 💔

[@joycebrett8364]

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.

[@TranslucentOne]

Thank you ❤️

[@dalaniekolakowski181]

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

[@bread9173]

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.

[@bigfoot617]

IMHO, this is your best video yet. So good, Katie!

[@TranslucentOne]

Thank you :) ❤️

[@carly9355]

Thanks for doing a video on this! I am trying to learn more about the different types of EDS and HSDs

[@NYC_Urbanista]

I'm so glad you were finally diagnosed & eventually treated for the neck pain ~ props to you for figuring it out! Xo

[@TranslucentOne]

Thank you! It was a really grueling experience. Once we knew it was a dissection it was such a relief that it wasn’t in my head!

[@pandapower5902]

@@TranslucentOne I can’t believe you have a dissection for that long without knowing it! I only went about three days before I force myself to go to the emergency room, but they told me there that it was muscle pain. I told him that I thought it was a dissection from what I had read online and so they let me do a CT scan, and I was right it was a pseudo aneurysm

[@TranslucentOne]

@pandapower5902 I wish I had pushed harder at the ER when they told me it was muscle pain and to go home and take Motrin. I had no idea about arteries though! Glad you got yours diagnosed fast!

[@pandapower5902]

@@TranslucentOne I had googled it and so was aware of when neck pain can be serious, and because the pain was so severe, and kept getting worse instead of better, like I actually had a full on panic attack because of the pain, and a hot shower did nothing Tylenol did nothing, I just really suspected that that’s what it was. But the doctor in the ER was like it’s just muscle pain. But I managed to convince them and then they told me they were surprised that I should’ve been a doctor lol. I had even treated myself with aspirin. The reason the doctor didn’t think I had it was because I wasn’t dizzy. But that doctor is so wrong because my non-dominant artery was the one that was injured, so my dominant artery was still giving my brain plenty of blood so I didn’t get dizzy.

[@anneteller3128]

Thank you for sharing your story. It helped give me direction for my vEDS, which I know realize my daughter most likely has as she perforated her colon.

[@TranslucentOne]

Hope your daughter is healing up well from that perforation. ❤️

[@lililove5563]

Hello, how old is your daughter ? my brother had colon perforation three times. We only recently learned that genetic research can be done.

[@anneteller3128]

@@lililove5563 early 30s. Are you talking about Elher's Danlos genetic research?

[@Christinesobsevations]

Thank you Katie ❤❤❤

[@lauraallsopp4506]

I have the EPS (Skin thing) and had a stroke and two dissections before one of the stroke doctors here in the UK sent me to sheffield a specialist centre to talk to a genetic councellor, as soon as she saw me she said i fit the profile, i had absolutely no idea what Veds was, i was pregnant at the time and they rushed a test through. I thought there is no way in hell i have this, it came back i did and boy was it a shock, not even a year later I have had my little boy, and he also has it. Its crazy because when i had the eps (which other than brusing) was my first sign, i went everywhere in the internet forums trying to get in contact with someone who also had it, that was back in 2010/2011, almost a decade later and i was diagnosed. I also have the features lie yourself, hand that look so aged, think nose, thin lips, translucent skin the only feature i would say ibdont have is having beautiful big eyes, but my son has been born with them! Reallt gioe you are keeping well ❤️

[@TranslucentOne]

Wow! What a diagnosis story, Laura. Glad you made it through all of that and finally got an answer! I feel we’ve really come far in a short time connecting community and growing a larger support network. When I was diagnosed in 2017 it felt similar- I found a couple people online at first and Annabelles Challenge in the UK but not much else. I think the VEDS Collaborative really brought people and organizations together and now with The VEDS Movement we’ve really come a long way. Much love to you! ❤️ I’ve had the EPS come back once on my leg a couple years ago and the dermatologists froze it off again too.

[@a_n_n_a5755]

You deserve more subs girl

[@TranslucentOne]

Hey thank you!! :)

[@hannah-lk3oc]

Im trying to find a diagnosis for my systemic health issues right now. I’ve landed on eds and many of my symptoms line up. Thanks for sharing your story.

[@TranslucentOne]

I hope you get the answers you need soon

[@miasophria]

hey! It's been 6 months how are things going for you? Have you gotten any answers? Hope you are well❤️

[@hannah-lk3oc]

@@miasophria I’ve hit a wall. I believe I have hEDS but in my genetic testing, they found I’m a carrier for cutis laxa. My genetic counselor believes this won’t impact me and it could still be hEDS (and based on my symptoms that’s likely what it is) but my doctor won’t consider it now that this other result came up. I have proof written by my counselor but they won’t see me for another six months and don’t believe me. I’m confused and don’t know what to do.

[@p.e.p.colomaio2740]

Thank you for this Video i will find out in two weeks from the Genetics Councilor if I have VEDS. Miss diagnosed with Scleroderma and having pain constantly. Veins in neck i have Pseuanyrisms and Dissections in neck. Vertigo and balance making the walls my friends when walking.

[@TranslucentOne]

I’m curious what caused the scleroderma misdiagnosis for you. I was tested several times because of the way my hands looked. One doctor was so sure he brought a medical student in to show them what scleroderma looked like! I hope you don’t have VEDS but if you do there is a lot of support out here now. Best wishes!

[@p.e.p.colomaio2740]

@@TranslucentOne my arm skin is thin and scarred

[@p.e.p.colomaio2740]

Vascular is what they think it is. VED's

[@TranslucentOne]

Got it. I hope you get your results soon and they give you answers.

[@sziniki3]

I just have a weird neck pain.🙈How your docs diagnosed that aneurysm on your neck? Also.You are absolutely gorgeous! Those eyes...cat eyes! Beautiful!

[@TranslucentOne]

Thank you! Mine was diagnosed with a CTA, which was necessary because mine was inside the base of the skull and could not be seen with an ultrasound.

[@pandapower5902]

@@TranslucentOne mine was at the base of my skull as well

[@pandapower5902]

It was a pseudo aneurysm, I had one too, in the same place, it wasn’t a weird pain but a very severe persistent pain that wouldn’t go away with Tylenol or heat

[@annaomeara9291]

Thank you for so much information on this syndrome! I am also seeking a diagnosis,. I have thin skin with very visible veins, severe gum recession at 35, thin lips/small chin/thin nose/large almond eyes, and thinning hair. However I don't bruise easily, have had 2 children and abdominal surgery (plus 2 D&Cs following both pregnancies as well) without any ruptures. But I'm curious, besides pain, did you ever feel a pressure in your neck? I have had horrible pressure on the right side of my neck on my carotid artery since last year. I also get terrible pressure in my chest/neck/head all over when I stand up too quickly. And after having my son and preeclampsia/post partum hypertension I use to get a horrible tearing feeling in my chest with simple activity/bending down. Weird stuff no one can explain for me. It really would be great to know if this is what's been going on all along.

[@TranslucentOne]

Hi there. I don’t have a pressure in my neck like you describe. I wish I could be more helpful! If you’re worried about VEDS I recommend getting in to see a geneticist or look into something like genedx to rule it out ❤️ best wishes to you

[@abbiepaeno4718]

Hi! I've been going through all the testing too for eds. I just got my genetic test results back and everything was negative except the COL3A1 gene. Not too sure what it means yet though. It has been a journey to say the least.

[@TranslucentOne]

Hi Abbie! I’m sorry you’re going through this but glad you’ve already gotten the genetic testing done. I hope you have an appointment or call with the geneticist soon to review what was found on the COL3A1 gene and give you some direction for next steps. ❤️

[@yms4355]

What nose hump??? Can't literally see it. You are gorgeous, woman!😱

[@TranslucentOne]

Haha thank you!!! ❤️

[@bonnieyoung4668]

My mom has all the facial features of VEDS and had a brain aneurysm at age 22 but I look just like my dad, even though I have the gene for VEDS too

[@TranslucentOne]

Such a good reminder that outward features aren’t always present in everyone with VEDS! ❤️

[@TravelingGrandma]

❤after 38 years I to have had a correct diagnosis! Where do I start? First things first, have you been tested for a Methylfolation Gene Mutation? MTFHR? I have that and VEDS, along with the classical EDS. Supplement with L Methylfolate has been a big game changer! It is the form of folate that my body can use easily. Also, sublingual B, D K A and E. Thank you for sharing your story! God bless!

[@TranslucentOne]

Hi! I was not tested for that. So glad you found your answers!

[@Anonymous-oc5pi]

I just got diagnosed last month I haven’t felt right since I can’t do most of the things I love now like rollercoaster and lift 50 pounds even though it’s easy how do you cope with it please I need some examples

[@TranslucentOne]

Hey there. I’m so sorry you are going through this. It is definitely a heavy diagnosis to live with and it’s a lot to process. I did a video recently about the emotions when I was diagnosed and how I coped. Basically I got involved in research and advocacy, and started connecting with other people who have it, and that helped me. I still have bad days with it sometimes, and I spend those moments walking, in nature, or doing art or music. There are lots of support resources at TheVEDSMovement.org. I launched The VEDS Movement with The Marfan Foundation in 2019 and direct it, but this channel isn’t associated with it. I hope this helps. Wishing you the best and hope you connect with others through the resources there. ❤️

[@winterpetal1]

🤗 stay safe god bless 🐥

[@apacur]

So, how did you fix the neck pain again? . & How was it diagnosed? Coratid Artery Ultrasound?

[@TranslucentOne]

After I stopped stretching so severely the dissection pain healed on its own. And the pseudoaneurysm from the dissection hasn’t grown, so we just monitor it for growth via MRA or CTA. Because mine is inside the skull, it can’t be seen on an ultrasound. So it was diagnosed and is monitored via MRA or CTA.

[@violetblythe6912]

I'm going to get tested for EDS in May. I'm worried that I have vEDS because it seems like most of my symptoms are more vEDS-like. However I am more hypermobile than it sounds like more vEDS people are, I have fairly stretchy skin, and although it is quite fragile and heals poorly I am not getting stitches frequently like you mention. But otherwise I have almost every symptom. Multiple doctors have felt very confident that I have EDS of some sort (two even brought it up without me saying anything) but I only just recently found one who even knew where to refer me. It's a hospital that normally diagnoses children, but luckily they agreed to see me even though I'm in my upper 20's. Hoping it's not vEDS but at the same time it would explain a lot.

[@TranslucentOne]

Sending you the best wishes for your testing! I hope it isn’t VEDS, and I’m glad you have an appointment already set up for that genetics testing. ❤️

[@baconman2.052]

How was your test?

[@5p674]

What's wrong with medical schools that give degrees to doctors(especially to rheumatologists) who are unable to diagnosis this? I guess we have to diagnose ourselves these days.

[@TranslucentOne]

Definitely think this should be covered more thoroughly in medical school. Geneticists are great resources for diagnosing this though! As a genetic disorder. Awareness should be more prominent for sure and luckily I think it is growing. ❤️

[@pandapower5902]

@@TranslucentOne I have a referral to a geneticist to test for this because I had an arterial dissection in my neck, but I haven’t heard back from them even though I contacted them like 10 times, just to set an appointment

[@TranslucentOne]

@@pandapower5902 wait times for geneticists are way too high. I hope you get in soon! What area are you in?

[@pandapower5902]

@@TranslucentOne I’m in NYC. I wish they would at least call me back so I can get on the waitlist

[@Rls_0523]

I'm so sorry you and your son have vEDS. I was just diagnosed after 10 years of trying to figure it out. I also have HATS. Can I ask what treatment you receive for vEDS specifically, if any?

[@TranslucentOne]

Hey there! Thank you for your kind message and I’m sorry to hear you have been diagnosed. I don’t have any children. Right now there is no FDA approved treatment for VEDS, but there are some upcoming clinical trials bringing hope for a treatment to our community. Check out PREVentVEDStrial.com and discoverceliprolol.com to see info on those trials in the works. There is also good info and resources for VEDS at TheVEDSMovement.org, which I direct but is not affiliated with this channel. I hope this all helps! All the best wishes to you as you navigate this new diagnosis. I know from experience it’s a lot to process. ❤️

[@Rls_0523]

@@TranslucentOne I'm sorry 🤦🏻‍♀️, I think I read a blog before seeing your video about a woman that was diagnosed and then found out her son had it as well. I'm on pain meds and muscle relaxers right now, so I think i combined her with you. I was just wondering if there's anything they're using to treat your symptoms, or if there's any medication to reduce symptoms overall. I have a lot of symptoms with mine that are very painful, but I don't want to just have to just take pain meds all the time and be groggy...and combine a blog with another person's video, for example 😂.

[@TranslucentOne]

Haha no worries! Completely understandable and I’m sorry you are going through all of that. I am on things that my doctors think might help reduce the risk of some life threatening events. For example, I am told to take miralax to manage GI issues and hopefully help reduce the risk of bowel perforations by reducing constipation. I wish I could help more. I hope you can find a doctor knowledgeable in VEDS soon to help manage your symptoms!

[@Rls_0523]

@@TranslucentOne thank you! I was looking for any kind of geneticist in my state and apparently there are a few but they all work at the children's hospital. I don't know if any of them will see an adult. I have a feeling this is going to be another long road to getting any kind of relief.

[@TranslucentOne]

What state are you in? There are a list of doctors at TheVEDSMovement.org. There’s also a nurse in the Help and Resource Center there who is so helpful.

[@desmonddermondbar5039]

I just came back from the appointment at my doctor who said I maybe could have veds. It's not 100% sure but possible. I went to the genetics doctor because of my stretchy skin at my neck so he did a genetics blood test. In my family history there are no cases of dying at a young age or unforeseen deaths. In the next days I should get the results but doctor already said it's probably veds. I don't really understand why he said that because I dont have fragile skin, I don't have hypermobility, normal facial appearance (maybe thin nose), no coagulation disorders, I even had surgery when I was a teenager because of inguinal hernia, there where no problems during surgery. Is it possible to have a mild version of veds? or maybe a version of veds with no veds symptoms?

[@TranslucentOne]

Hi there. Do you know if he’s testing you for all the types of EDS? There are other types with very stretchy skin. Also, severity of VEDS is a spectrum and there are people without any outward features at all.

[@desmonddermondbar5039]

@@TranslucentOne hi, thanks for your answer. Just as I got back home yesterday there was the result in my mailbox. Looks like they found changes on gene COL3A1. The variant is c.784A>G; p.Met262Val I looked it up on Google and I found out that this variant is uncertain significance. So what I understand is that this variant maybe have no effect on the protein structure. Am I right?

[@TranslucentOne]

Hi! I’m so sorry this got stuck in my held for review filter and I didn’t see it. I hope you’ve seen a genetic counselor who explained this variant to you since this message!

[@desmonddermondbar5039]

@@TranslucentOne thanks for your answer. I've got tested for several types of eds. I've been to a very good genetics doctor who was recommended from many people here in germany for a second opinion. He was surprised that the other doc suspected me for veds or any type of eds. Beigthon scor 0/9. Just stretchy skin on the neck. The visible veins are explained because I'm very slim he said. The genetics test result showed a vus on Col3a1. The exact variant is c.784A>G p.Met262Val It's suggested that it will not adversely affect protein function. It's also found in multiple mammalian species. So he's suggesting that this vus won't lead to veds. However it's a vus, so he can't say 100% that I don't have veds but hes suggesting that it's not harmful.

[@desmonddermondbar5039]

@@TranslucentOne thanks for your reply and no worries. Yes I've been to a specialist here in germany and he reviewed the report of the first doctor. He was shaking his head and said that he is surprised about what the doctor was writing there. He was looking at me and performed the beighton test. I scored 0/9. He looked at my stretchy skin and my veins that are somewhat visible on the wrists and upper legs/hips. He said that it's normal that my veins are visible because my bmi is only 18. My father was diagnosed with an abdominal aneurysm at the age of 71. He didn't referred it to veds because my dad also had arteriosclerosis. So the specialist said that he doesn't suspect veds nor eds in general at all because I nearly meet none of the eds related symptoms. To the vus he said that it wouldn't mean anything at this moment now. Nobody knows if this variant will cause any damage or not. The computer predictions suggest that this missense change will not adversely affect protein function because the valine aminoacid residue is found in multiple mammalian species. The variant is c.784A>G p.Met262Val So he said he wouldn't worry at all now. Furthermore he said I can get my aorta checked every year via ultrasound. I can come back to him in 4 years, maybe there will be further data about this variant.

[@ceralkiller8967]

Hey I need some help, I think I have veds and don’t really know how to go about dealing with it

[@TranslucentOne]

Hey there! I would reach out to the nurse at the help and resource center of the VEDS Movement. She is really helpful! TheVEDSmovement.org/ask. There is also a group on Facebook called VEDS Zebras that might be helpful ❤️

[@MrBurningxembers]

I saw a lecture by a doctor. He said the majority of his patients sleep with their eyes half open. I've never heard of that before. Do you happen to get that symptom?

[@TranslucentOne]

Hi! Yes, when I was a kid I did sleep with my eyes partially open sometimes. As an adult I don’t think I do anymore. But it’s well known anecdotally in our community that many people with VEDS sleep with their eyes open or partially open.

[@alejandropower]

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

[@TranslucentOne]

EDS is usually diagnosed by a geneticist and there are so many types. If you think you might have it, a geneticist would be the place to go.

[@apacur]

Would a Rheumatologist or Vascular doctor diagnose this ?

[@TranslucentOne]

I think usually a geneticist. Sometimes a rheumatologist or vascular doctor will order the test- but it’s ultimately diagnosed with a genetic test.

[@vancekershaw6876]

Hi Katie I just wanted to say I hope you feel better and I want you to know that you are a very beautiful woman and I love your nose i say it's beautiful 😍 ❤ you might not think so. But you have a nice beautiful face. I say this because I care

[@TranslucentOne]

Thanks Vance!

[@beverlyquigley6608]

I wonder how many people have variations of EDS versions that they never find out. I don’t officially have EDS but my youngest son has severe hyper mobility in all his joints. I have hyper POTS, my middle son had fair translucent skin but also had a sunken in chest like marfan(very tall long arms, long fingers). He would pass out all the time. My spine was very hyper mobile. I remember as a child, they would test me for scoliosis all the time. Never found anything until 2 years ago on my tale bone 😂Our genetics must be really weird.🤔

[@TranslucentOne]

It sounds like y’all would benefit from seeing a geneticist. Have you seen one? ❤️

[@2siameezers]

I have EDS Hypermobility with long arms, thin skin, sunken chest (pectus excavatum), acrogeria. There are some of us with marfaoid habitus and hypermobility EDS. I’ve been wondering if there is a subset with marfanoid habitus. I’ve tested negative for marfans.

[@TranslucentOne]

Did they also test you for VEDS and Loeys-Dietz?

[@MusicJunkie37]

@@2siameezers I am in a similar situation as you, did not test positive for VEDS or Marfan either.

[@pandapower5902]

Who are these customers at the convenient store asking you so many personal questions about your appearance

[@TranslucentOne]

Haha right?! I will say it was a community of regulars so I saw many of the same customers several times a week. Maybe that made it easier to ask personal questions like that?

[@mariasoliz1487]

I can hear in your voice the narrowness of your noise.

[@TranslucentOne]

lol thank you 😂

[@Carrieliney]

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

[@TranslucentOne]

❤️

[@juancarloscortezserrano2786]

I think i need a MRI...

[@TranslucentOne]

Hope you get everything figured out!

[@Ib90]

Does a MRI show if you have this? I went the the ER and with terrible neck pain.. the only thing they said was your brain shows someone with a headache and you have c6 to c4 neck pain.

[@TranslucentOne]

My dissection was finally diagnosed with a CTA and can also be seen with an MRA (which is like an MRI but of the arteries). I hope you get some answers and relief soon!

[@rxvanz]

Can you get on disability with VEDS?

[@TranslucentOne]

My guess is it would probably be dependent on the individual circumstances. I know VEDS is not on the Compassionate Allowances List for disability, but I think some things that are consequences of having VEDS may be. I know a couple people who are on it due to life-threatening complications they had. Definitely a question for the admins of those disability programs- I think they could answer more definitively.

[@rxvanz]

@@TranslucentOne thanks😊

[@TranslucentOne]

No problem!

[@autistictips1161]

My husband got disability for his symptoms for presumed hEDS (just recently we found out it's actually vEDS). His symptoms at the time were things like severe pain and trouble walking (I think he was 21 and used a walker) and migraines and mental health issues. Disability is hard to get but your best chance is to have a lot of medical documentation and a good lawyer to explain your struggles.

[@moonglaive]

"You don't meet the criteria bc you're not hypermobile." 🙄🙄🙄🙄🙄🙄 They won't test me for EDS ~because~ I'm hypermobile. And apparently, rheumies around here won't see kids at all if there's suspected EDS, Marfans, or a dx of hypermobility. It's so frustrating.

[@TranslucentOne]

Ugh that’s so frustrating. Have you tried the tests available through invitae or FightVEDS.org?

[@moonglaive]

​@@TranslucentOne not yet, but my sister suggested the first one recently. The local eds group said there's a county program opening up for a study.

[@valerienewsome3019]

Nice try, but you get 23 chromosomes from each parent, meaning even if Jesus only had his mother's chromosomes, he would have 23 not 24. It's a good thing I don't need fake info to believe in Jesus.

[@TranslucentOne]

I’ve read this comment several times and I don’t remember talking about chromosomes or Jesus in this video. Did you comment on the right video?

[@valerienewsome3019]

@TranslucentOne So sorry, and you are absolutely right ✅️ I must have been way more tired than I thought. It was another video I was responding to.

[@snowoman8832]

you should make 230 videos about your flat chest pancake syndrome