Vascular Ehlers-Danlos Syndrome (vEDS)

Рет қаралды 76,396

4 жыл бұрын

Vascular Ehlers-Danlos syndrome (vEDS) is a dominantly inherited, genetic connective tissue disorder. vEDS is particularly serious because of the risk for spontaneous arterial or organ rupture.
Potentially fatal effects include arterial aneurysm, dissection, and rupture; bowel rupture; and rupture of the uterus when pregnant. Life span is often affected.
This awareness video hopes to highlight some of the experiences of the community living with vEDS, the impact on their families, the importance of education and research, and hopes for the future. There is no better way of hearing what it is like to live with vEDS, than from individuals who have vEDS themselves.
The Ehlers-Danlos Society is proud to be a member of The Vascular Ehlers-Danlos Syndrome Collaborative, a group of patients, family members, researchers, and clinicians, dedicated to developing a patient-centered plan for scientific research, to improve the management of vEDS, and to increase the quality of life for all those impacted by the condition.
A vEDS diagnosis is most often sought because of family history; someone’s medical history; or pregnancy complications at a young age. Confirmation helps rule out other possible causes for symptoms as well as establishing a clear need for medical surveillance, treatment, and study of family members.
After diagnosis, the first priority is assembling an integrated care team to provide a clinical and social support network for the individual and their family. Management is complex and requires multiple specialists who can respond to and manage major complications.
In 2019, The Ehlers-Danlos Society launched vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vEDS.
VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients with vEDS. Clinical experts run a program that covers the main aspects of vEDS. Participants are able to share their cases and questions in the sessions and are guided to further educational materials and support. Continued Medical Education (CME) credits are available at no charge to participants. www.ehlers-danlos.com/project...
The Ehlers-Danlos Society offers monthly virtual support groups for those living with vEDS and their families, and also a group dedicated to parents; those who have vEDS and those who have children with vEDS. www.ehlers-danlos.com/virtual...
We are delighted to be hosting a dedicated event for vascular Ehlers-Danlos syndrome (vEDS) on July 31, 2021. Join us as leading experts present the latest research, management, and scientific information on vEDS and comorbidities. We will be offering live translations during this event in English (original language), French, German, Spanish, and Japanese. Register and learn more here: www.ehlers-danlos.com/eds-ech...
Much more awareness is needed of this type of Ehlers-Danlos syndrome, it is important that health professionals are educated in the presentation of vEDS, genetics and familial impact, possible implications and surgical interventions, and treatment guidance. The Ehlers-Danlos Society is committed to improving the lives of those impacted by vEDS, and facilitating global awareness and education. Our strength begins with hope. ehlers-danlos.com

Пікірлер: 137

@christineshultz7615 Жыл бұрын

My son passed away last December from an aneurysm and we found out then that veds existed and he had it. It was the day after his 22cd bday. I'm glad he lived a full life hiking and doing all the physical things he did without fear or anxiety. I wish we'd had him longer 😔. We donated his organs so he continues to have a positive impact on other's well being.

@megang1712 Жыл бұрын

Sending you so much love, I’m so sorry. Just know he’s happier than any of us down here and now you have another Angel with you. As one mother to another I’m so deeply sorry.

@OMaria-qc1kz Жыл бұрын

I’m so sorry, my heart goes out to you. If you don’t mind may I ask if he had any warning signs in his younger years? I suspect my son may have it.

@gigi4713 Жыл бұрын

Im so sorry for your loss. I am so happy that his organs were accepted for donation! There has been some discussion amongst EDS and people living with other genetic or tissue fragility syndromes about being able to donate or even receive organs.

@amyowensmurray9163 Жыл бұрын

Im so sorry for your loss

@christineshultz7615 Жыл бұрын

@@OMaria-qc1kz so let's start with as a child I had horrible headaches and migraines. They were very frequent and have lessened with age. He had headaches , rarely migraines, sometimes and that's because he had them far less often than i had headaches. So headaches did not concern us based on how infrequently he had them compared to younger me. He had all the physical elements always listed like thin lips, this that and the other. However, he was comes from a family of extremely tall people and that's just what we look like so that didn't concern us. He handled pain well and broke several bones in his life but took it like a trooper. There was nothing that really screamed get this kid to a doctor now. He looked and reflected the traits of multiple family members. I guess it would be fair to guess a lot of us could have veds now that we know new information.

@ledajanssen2610 3 жыл бұрын

I have just almost died from vEDS. I am so thankful and happy to be alive and I am so thankful for this video!

@antonupnxt2135 3 жыл бұрын

God bless!

@simonram8505 3 жыл бұрын

What happened?

@brandon3872 3 жыл бұрын

I'm sorry to hear this. I feel guilty for complaining about my hEDS. I hope a treatment for vEDS is found.

@TheEhlersDanlosSociety 3 жыл бұрын

So incredibly sorry to hear that Leda, we're so pleased to hear you are OK and thank you for your comment.

@thewalnutdairy618 3 жыл бұрын

@@TheEhlersDanlosSociety is it possible to have 5of5 clinical(Mayo) and gene MYH11 mutation individually verified sequencing w familial TAAD and MMIHS and only be hEDS..? Geneticist literature links MYH11 and EDS but pushes it to TAAD and MMIHS, how could they be all there and all not 1 vEDS? Please very important..🙏🏽

@fleurnoire360 9 ай бұрын

I have vEDS 😢 I‘m 29… Silent strokes, Carotis dissections and aneurysms in my head…inoperable. And my joints go out. Many operations… 20! I lost my baby last year 💔 But I think positive! Love you zebras 🦓 Stay strong!!!

@lisahutchins8186 9 ай бұрын

Heart breaking all the best to you ❤

@fleurnoire360 9 ай бұрын

@@lisahutchins8186 thank u so much ❤️

@alishaparker315 3 ай бұрын

Hi there I’m so sorry for your loss. I know tht pain unfortunately. I wish u health n happiness❤

@stopthephilosophicalzombie9017 2 жыл бұрын

This condition is so heartbreaking. I hope a treatment is developed soon.

@kittypools266 Жыл бұрын

It doesn’t work like that, it’s all from birth and it’s the internal structure of the collagen that holds together everything in your body being mutated and working incorrectly.

@stopthephilosophicalzombie9017 Жыл бұрын

@@kittypools266 I realize that. That doesn't mean that there isn't a chance they can develop a gene therapy based treatment. Cystic fibrosis is now a treatable conditiion despite also being genetic. Edit: Well, what do you know, there's an experimental gene therapy treatment for this condition that is currently being tested in clinical trials called Edsivo

@aysialee2465 Жыл бұрын

@@stopthephilosophicalzombie9017 so glad I saw this. I have dysautonomia and am currently in genetic testing for a type of EDS and because my chronic blood pooling and easy bruising I fear the worst that I have veds. This gives me hope for if I do have it. Plus I wish to be a medical/ pharmaceutical scientist when I graduate to research in the field.

@stopthephilosophicalzombie9017 Жыл бұрын

@@aysialee2465 Glad I could be of help. Best of luck.

@DarthMarr2009 Жыл бұрын

⁠@@aysialee2465Good luck, I hope stuff turns out well. Stay safe and most importantly be happy.

@shermac246 2 жыл бұрын

I made a friend online with a lovely human being who had vEDS so I am learning as much as I can about it so I can best support her and others with this illness.

@kathleenyasick6540 4 жыл бұрын

Thank you so much for doing this video. Love to all!

@HitchyGirly 4 жыл бұрын

Thank you all for working so hard to create a resource and a community. I was very much looking forward to the walk in April and the conference. Hoping Covid19 goes away soon so I can have an opportunity to meet you all.

@norahjoe2300 2 жыл бұрын

I just heard about it today from someone and I'm amazed at the strength you give to the society

@zoesurvivor5050 3 жыл бұрын

Thank you I too have VEDS as well as HEDS and so much more lol happy and positive has made it so I can be 51!! Love this video!!

@isabeleiler1491 2 жыл бұрын

I have VEDS & love this video. VEDS is so isolating because its rare & no one understands. Seeing this reminds me that I am not alone in this fight #zebrastrong

@ewelinastanulewicz8919 2 жыл бұрын

What does zebra mean?

@dianalynndesigns 2 жыл бұрын

school

@dianalynndesigns 2 жыл бұрын

In medical school doctors are taught not to look for zebras (unusual) because the answers are more likely routine or common issues.

@shainemorris2506 4 жыл бұрын

So powerful. Thank you to the EDS Society for doing this.

@TheEhlersDanlosSociety 4 жыл бұрын

Thank you for being a part of this awareness film Shaine, it is so important for the vEDS community.

@amalfojo2421 2 жыл бұрын

@@TheEhlersDanlosSociety انا من فلسطين ومن غزة تحديدا ولدي ابنه تعاني من EDS ولديها كل الاعراض مجتمعة تعاني من الجلد الرقيق والاوردة الضعيفة خاصة الشريان الرئيسي بالقلب العيون الواسعة والبشرة الشاحبة والذقن الصغير صدر الحمامة وانحناء بالعمود الفقاري مزدوج قصر في عظام العضد والفخذ الفك السفلي اصغر من المعتاد مثانة عصبية تم اجراء عمليتين جراحيتين خلع ولادة منذ الشهر السادس بعد الولادة ويجب تغيير الشريان التاجي عند بلوغها عام 13لضرورة استمرار حياتها . الطفلة بحاجة وجود مجتمعكم بجانبها لانها تشعر بالوحدة والتمييز عن باقي الناس . ودائما تسال لماذا انا كذلك ولماذا لا اكبر ولماذا شكلي هكذا ومتى سوف اصبح مثل اصدقائي . وانا لا اعرف ان اواسيها في بعض الاحيان .

@yms4355 4 жыл бұрын

A Finnish cEDS patient here. Love you.

@Ib90 3 жыл бұрын

What are you symptoms?

@yms4355 4 жыл бұрын

Such a good video!

@Paol24A 4 жыл бұрын

An hug at all zebras.❤

@megankatus5975 2 жыл бұрын

i’m currently in the process of gene testing for veds and this makes me a little less scared about the whole thing. still nervous about how the testing will turn out tho 😬

@stopthephilosophicalzombie9017 2 жыл бұрын

Any word?

@DarthMarr2009 Жыл бұрын

I hope it goes well, remember to be happy.

@DarthMarr2009 Жыл бұрын

Any updates on the testing if I may ask?

@vik2077 Жыл бұрын

I got diagnosed with hypermobility EDS and getting tested for VEDS and I'm really scared. I want to be here for my family. Every story I hear from this video I relate. I had a seizures and dislocated both my shoulders and have had multiple surgeries to fix them. IDK how to feel

@justinerodriguez-kirschner3294 Жыл бұрын

Same. My doctors are pretty confident with all the testing and plethora of symptoms. I can deal with my own diagnosis. However, like you, I don’t know how to feel about the implications for those around me. (Husband family and my daughter). I hope you are doing better.

@BD-to6md 4 жыл бұрын

God bless you all. I have EDS hyper mobile.

@horsepng4263 3 жыл бұрын

Epic

@dianalynndesigns 2 жыл бұрын

I have Vascular EDS. Unfortunately I have lost three babies at a very late gestation. Was successful with two Praise God! My bowel ruptured at 49 years of age. Was very very lucky to have a surgeon willing to do an exploratory and found two feet of my bowel was dead. Nothing appeared on the CT or ultrasound. The Emergency Doctor wanted to send me home. Needless to say I would hove died that night. Right now my chin have separated from my gum line due to an old surgery. Stitched are denigrating instead of holding the chin in place?

@RovingStreets 2 жыл бұрын

I read my genetic test last night. I am so afraid. I am 43. I don't want to die. Five years to live now.

@elizabethdavis7922 2 жыл бұрын

I found out at your age. I'm 50 now. It makes you a lot more aware of taking good care of yourself in every way.

@oshunbleu6511 Жыл бұрын

Don't think that way!!! Thoughts are POWERFUL!! I have it too. I am just 58. I'm so so lucky. Believe. Talk to your arteries and body. Love yourself overall 🤗

@ZeldaZelda-RichesToRags 3 жыл бұрын

Newly DX EDS, Mast Cell....PAIN, failed spinal fusion. LOSING HOPE

@jancrawford4267 2 жыл бұрын

Praying for you

@ZeldaZelda-RichesToRags 3 жыл бұрын

right now I am sooo upset, feeling down, newly DX with EDS after having spinal fusion surgery that went sideways and now my pain is worse than ever.. but having EDS changes everything. WHY this wasn't DX earlier during the 20+ years I was being seen by a Rheumotologist who specialized in EDS... had I known I had this, I wouldn't have had spinal fusion surgery.

@Natasha-we4qz 2 жыл бұрын

Hi there! I too am suffering from eds and have spine issues from so long. Can you tell how would have prevented it.. because i am also afraid i can get it. Can you guide me please

@Rls_0523 2 жыл бұрын

I'm supposed have spinal fusion next month but just found out i vEDS. I've been very sick for 10 years but have been sick my whole life. It's not confirmed yet, but it explains every health problem I've had since birth. Even if the surgery were successful, it wouldn't improve my QOL, which is basically non-existent at this point. I can't live like this, but can't have the surgery and can't do anything else to get relief. I'm done fighting and enduring constant unbearable pain and painful tests and procedures with no relief. It should be legal and socially acceptable to let people in my condition, and even worse, out with a little dignity in tact.

@luizc.vieira621 4 ай бұрын

Please, would you share the name of the background music? It seems to be a Plilip Glass' composition. I'd very much like to know. Thanks.

@gillifish Жыл бұрын

I have EDS and think I have VEDS but can’t get genetic testing. I’m terrified.

@justinerodriguez-kirschner3294 Жыл бұрын

I’ve been dx with hEDS. My neurologist and cardiologist think I have vEDS and I’ll be getting testing here soon. I can deal with the possibility of me having it. But my daughter and sister have to be tested now as well. I don’t know how to deal with the grief of possibly passing this to my 9 year old daughter. I feel so guilty.

@MDcrabster65 Ай бұрын

Oh dear, my heart goes out to you. Please ditch the guilt; it's such a useless emotion. There is no way you could have known, plus her soul chose you as her mom for a reason

@nogard-lanreteprettypeas7624 Жыл бұрын

hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think

@suziebee2945 3 жыл бұрын

My Cartilage in the front of my neck swells up goes hard could this be because of the vEDS I also had a bowel blockage at a week old had open stomach surgery, I was a rheus blue baby as my mum had the antibodies rh negative, I’m awaiting surgery for another bowel blockage because of the sulfsalzine I was on , I’ve been sick for so many years but this last two years has got to be my worst lost 7 stone in weight, no one is listening to me or helping me,

@tburnette910 2 жыл бұрын

I'm so sorry you are going through this. Have you contacted this society for help?

@vintagevixen8486 2 жыл бұрын

I have the other version of EDS, but I’m having more trouble as I am almost 45 years old with veins rupturing for no reason, I scratch an itch and get a huge bruise, I’m fainting and having symptoms like that of a TIA or stroke. I’ve lost faith in my hospital because I’ve been treated so badly that I don’t even go in when I have any of these things happen. I don’t know what to do.

@vintagevixen8486 2 жыл бұрын

I also passed it down to all 3 of my kids 😞

@TheEhlersDanlosSociety 2 жыл бұрын

do contact our helpline team who can advise and offer support: www.ehlers-danlos.com/eds-helpline/

@BellaBoo13595 2 жыл бұрын

I really would like to know which EDS I have but unfortunately I live in an area with very little resources. I don’t even know where to start on trying to find out any of this. I suffer from so many health issues and need to know if these stem from my EDS.

@TheEhlersDanlosSociety 2 жыл бұрын

Hi Ashley, a good place to start is to find the local support groups, charities, and organizations who are in your country/state/area and they will be able to advise on the best way to speak with the doctors in your area: www.ehlers-danlos.com/affiliates-support-groups-and-charities/

@Keeperofloveys6 2 жыл бұрын

I think I have this, and not sure how to get diagnosed. My grandma died from an aneurysm, and we have all the symptoms plus some...

@TheEhlersDanlosSociety 2 жыл бұрын

Hi Sandy, vascular EDS (vEDS) can be confirmed or ruled out by genetic testing: www.ehlers-danlos.com/eds-types/

@Citrusverbena Жыл бұрын

I talked to my doc and they ordered a ultra sound to be sure I didn’t have a enlarged aorta. I didn’t. Later, after being on a very lengthy diagnosis wait list I found I didn’t qualify for any of the EDS classification but was diagnosed as generalized hyper mobile. It’s important to find out. I noticed you on another page. I pray your healing from your TBI. I’m healing from a concussion myself. It’s slow. I hope your safe and well.

@judypino6512 2 жыл бұрын

I just found out I have the "vascular" subtype after nearly dying from blood loss during a hip replacement surgery; a 2-hour surgery turned into nearly seven hours. At this point (age 73), I don't know which way to turn.

@brandeng1000 2 жыл бұрын

You made it to 73 I think you’re doing good! Most are dead by now

@sirhobbyless 5 ай бұрын

i have vEDS and i almost died in october of 2022 because of a artery and vein ruptering in my left leg im alive but probaly will never be able to walk normally again, hope there will someday be a cure to this terrible sickness

@LBK1984 3 ай бұрын

Wait, like do ppl with this need to get a pacemaker>>?

@Sora2529 4 жыл бұрын

I'm gonna be 30 in a couple months and suspected to have Ehlers-danlos syndrome. At this point of time would you know if you have this disease or not?

@alona270 3 жыл бұрын

Maria C definitely not! This is the problem! Most children have a parent diagnosed or have a very severe form of it that makes it undeniably vEDS. A lot of the times, like a lot of EDS- it is not uncommon to not be diagnosed with it by 30...

@nickiowen6889 3 жыл бұрын

I didn't know I had it when I was 30. I then had a heart attack at 35 while pregnant with my second child due to coronary artery dissection. It still took a further 3yrs to get a diagnosis.

@mamadusty1111 2 жыл бұрын

I’ve had an unknown illness since I was a child. I had bleeding from my bladder and awful pain in a number of places. I’ve seen so many doctors as I grew up it just got more painful and scary. I have several “hemangiomas” on my skin and internal ones that they found in my 20’s. So they focused on that as the cause of my pain for the passed 20 years. But I’ve always told them- my vascular tumors/lesions don’t behave like “hemangiomas”, they come from injury and sometimes illness. I knew it was not simply birthmarks. I happen to stumble across a Facebook comment about hypermobility being a symptom of a chronic pain disorder and started looking it up. The pictures that popped up on google were from my childhood. Stretchy skin, legs above my head, weird scars. I’m waiting to see a rheumatologist for diagnosis but I know I have it. My pain has been changing over the last 10 years and it didn’t make sense- now I know it’s text book Eds progression. I’m 44 years old. I spent weeks at the Mayo Clinic and I’ve seen well over 50 drs - none ever thought Zebras. They always commented about my impressive flexibility during my physicals or at my Physical Therapy consultations. No body caught it.

@TechnicallyJustin Жыл бұрын

It is a condition that statistically does not affect 90% of those under the age of 20. That number drops to 40% by age 40, however. I only know because my mother had an aortic dissection that led to all of us being tested.

@duckwolfswife6795 3 жыл бұрын

Does anyone know a good doctor near Portland Oregon????

@TheEhlersDanlosSociety 3 жыл бұрын

The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so we have created this list that is populated by professionals submitting their information to our site: www.ehlers-danlos.com/medical-professionals-directory/#usa It is important to note that The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific doctors or clinics listed on our EDS-friendly directory. There are no formal listing criteria, and The Ehlers-Danlos Society does not endorse, recommend, or certify any of these physicians. Our affiliate groups may also have lists of local EDS-friendly specialists you may wish to contact them at: www.ehlers-danlos.com/affiliates-support-groups-and-charities/

@Lostmyspoons 3 жыл бұрын

Margaret McReynolds at OHSU is a Physical Therapist. She’s is a specialist in EDS. She’s the one who actually diagnosed me after a decade of so many symptoms. I highly highly recommend her.

@IrishTequila 3 жыл бұрын

What kind of doctors diagnosis this?

@TheEhlersDanlosSociety 3 жыл бұрын

If you think you might have one of the Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD), and particularly if someone in your immediate family has been diagnosed, ask your doctor if a diagnosis fits your symptoms. If they choose to, any doctor who can diagnosis a disease is able to diagnose EDS and HSD; but most likely you’ll be given a referral to a geneticist, because EDS are genetic disorders and geneticists are most adept at distinguishing between those diseases, as well as in doing any testing necessary to differentiate EDS and HSD from the more than 200 other heritable connective tissue disorders. www.ehlers-danlos.com/what-is-eds/

@sadiegrace5326 3 жыл бұрын

I’m going to my orthopedic, geneticist, and rheumatologist but your best bet is a geneticist

@jancrawford4267 2 жыл бұрын

I know my family has this and no one will test us. We have had multiple events. My 16 year old has narrowing or possibly collapsed arteries in her brain the MCA and left PCA and has vaso spasms daily and dysautonomia daily. We have Bleeding issues, soft tissue injuries, AVMs, cavernous hemangiomas, scoliosis, thin skin the bruises terribly, hemi pelagic vascular migraines and the list is too extensive to list. They thought it was vasculitis but the inflammatory markers were normal. How do we get Help?

@tellem372 2 жыл бұрын

Ideally see a geneticist who understands eds but there are doctors who specialise in eds too (different countries vary significantly with this). With Genetics, you can organise to be tested privately but it often costs quite a lot of money and also recognise that not all forms of eds have markers yet (although close to discovery!!). But also know there are over 200 connective tissue disorders so even if you don’t have eds, doesn’t mean something isn’t wrong. Hang in there!

@TechnicallyJustin Жыл бұрын

I'm sorry to hear. I have vEDS as well as my mom and we both suffer from hemiplegic migraines. They suck

@IvySnowFillyVideos 9 ай бұрын

Get a different Doctor & a referral to a specialist. In my case my first primary Doctor wouldn't listen. I went to a different Doctor & started getting help immediately.

@staciwhite1256 9 ай бұрын

My primary care Dr. gave me a referral to a geneticist in Jacksonville. I’m looking forward to finally figuring out what is going on with my body. I’ve seen multiple specialists for different issues that might be stemming from this condition that has gone overlooked by everyone during my lifetime until recently. I’m 46, dislocated each shoulder simply sleeping, dislocated a hip simply getting out of bed, dislocated each knee more times than I can count. You can see the blue veins beneath my fair skin. All the scars I have from injury or surgery have no pigment and they don’t tan over when exposed to the sun, they stay bright white. Been having migraines for 38 years, too. I wasn’t able to have children, but my niece inherited at least the hyper mobility problem through my brother, who exhibits no signs of it in himself. I sincerely hope you were able to find a way to get a firm diagnosis for you and your family.

@kikibe1960 2 жыл бұрын

Are people with vEDS more at risk for certain cancers?

@user-mr6yq3kc1e 2 жыл бұрын

Yes , they have got a metalloproteinase defect. Because of that

@kikibe1960 2 жыл бұрын

@@user-mr6yq3kc1e Any particular cancers?

@gigi4713 Жыл бұрын

Is Cutaneous lymphoma a higher risk?

@kevinspliid8509 7 ай бұрын

Is constipation related to this eds ?

@TheEhlersDanlosSociety 7 ай бұрын

Hello! Please reach out to our helpline with your question www.ehlers-danlos.com/eds-helpline/

@Hevva67 5 ай бұрын

Yes, in childhood.

@brianw.5230 3 жыл бұрын

What's the average life expectancy with it?

@69birdboy 3 жыл бұрын

I think it's more widespread than believed and we are only seeing the severe end of the spectrum of beds Just my intuition. I bet there are less aggressive forms of beds where people live a full life span

@simonram8505 3 жыл бұрын

If you're male and have marfanoid habitus you're screwed. These are the ones that go first, 30-40 years max.

@mohammedaffanahmed8832 3 жыл бұрын

@@simonram8505 I was told I have marfanoid Habitus and i am a male of 25, and i think i too have some form of EDS.

@Ib90 3 жыл бұрын

@@methanegummybear4336 wow, how does one know if they have veds, can 21 and me dna test show the gene for veds?... what do they die from?

@jtrentful 2 жыл бұрын

@@simonram8505 my brother died recently at 39 I am researching as much as I can the only hope for people with this condition is a proper diagnosis so that they can properly prepare to die instead of never knowing what's going on until it's too late

@Luna-wh6tq 9 ай бұрын

I have had pain all my life - multiple fractures - dislocations, bruising easily and so on - Things got worse over the last 2 years and I am waiting for whoever diagnoses EDS to see me . My optometrist agrees this may be Veds , My family doctor thinks the same and so does my GI specialist . After seeing a physio therapist today - her acknowledging that I show physical signs of this condition. It has affected my body so much that at 38 I am 105 lbs , two discs and my lower back are now compressing causing my leg to give out at random times . My eyes are being affected and they suspect my heart may be showing signs of damage . So how long does it take to diagnose this because my hourglass ⌛️ is running out of sand and I’m so exhausted from this pain .

@TheEhlersDanlosSociety 9 ай бұрын

Please reach out to our helpline for resources and support! www.ehlers-danlos.com/eds-helpline/

@Luna-wh6tq 9 ай бұрын

@@TheEhlersDanlosSociety thank you - I just sent a message .

@jodiandersonbrown6827 10 ай бұрын

Even Specialists are uneducated re EDS 😢 they think if you have Hypermobile EDS you can't have Vascular issues 🤯

@savagesfortruth Жыл бұрын

I have v e d e s. Sinus Tachycardia know as pots of lady who swallowed a fly

@josephl6289 Жыл бұрын

Hugs are awkward

@victorfergn 3 жыл бұрын

Good, I don't have this. My case must be different then

@stopthephilosophicalzombie9017 2 жыл бұрын

Do they have to say "pinched facial features?" Couldn't you say it "delicate" or "thin" or even "fragile"? Almost anything would be better than "pinched".

@salaammazloum912 9 ай бұрын

Maybe, "pinched," can include thicker features between races?