Ehlers-Danlos Syndrome - Trevor Wiberg - Patient Testimonial

Clinical research, education and treatment for Ehlers-Danlos syndrome (EDS), a group of inherited connective tissue disorders for which there is no cure, took a significant step forward with the establishment of the Ehlers-Danlos National Foundation Center for Clinical Care and Research at GBMC's Harvey Institute for Human Genetics.
The Ehlers-Danlos National Foundation (EDNF) supports a virtual center at Greater Baltimore Medical Center (GBMC) under the direction of Clair Francomano, MD, GBMC's Director of Adult Genetics. The Center provides comprehensive clinical care for patients, professional education for physicians, and develop research.
"To every patient, every time, we will provide the care that we would want for our own loved ones."

[@WhereTheBeaversLive]

37 years of it for me..and it was frustrating as hell. Once I had the diagnosis I thought I would finally have help..but 3 years later and I am still fighting for help. ☹️

[@brandeng1000]

There is no help. I also have it. I have vascular ehlers danlos. You just gotta live with it. Wake up everyday in pain and move forward! Marijuana is my savior!

[@albertjosiah1642]

Sorry to be so offtopic but does any of you know of a way to log back into an instagram account?? I stupidly forgot my password. I appreciate any assistance you can offer me.

[@tulafitzgerald5649]

Yes, I know that scene. as there is no genetic ‘Proof’ many MD seem fearful of making a diagnosis.

[@WhereTheBeaversLive]

@@lunarae8037 we did bracing but it didn’t help… I’m almost 8 years post-diagnosis and just got into pain management a couple of months ago. It’s been a long battle. I also have dysautonomia, arthritis and chronic migraine, so it’s been a rough ride.

[@viperstrike3827]

diagnosed at 19 and its not severe im so blessed

[@flyinghigh990]

How did you get diagnosed? I'm finding it so fuckin hard to get help..

[@jennifertustin6629]

@@flyinghigh990 I was diagnosed at 23 I referred myself to a rheumatologist and was like listen I know I have EDS. I’m in pain everyday I can’t take it anymore and showed him my joints.

[@fatimaj4113]

@@flyinghigh990 you can do a genetic test and it might show

[@ChinchillaQueen]

Diagnosed with hEDS at 26 as well as with arthritis and tendonitis. Always great to find someone that actually supports you the way you need to be supported

[@spendrera]

Hi, i have AS and EDS also....an unlucky combination of diseases, what?

[@frankirae404]

Thank you for making this. Really having a horrible flare. And I wish I had a friend in person with this as well. I’m really feeling hopeless and alone. It’s kind of nice to see I’m not alone.

[@virginiagonzales4952]

Hello, Thank you for being so brave and share your message. Please know, I am wishing you healing and encouragement to continue your difficult journey, you are not alone anymore. Kindly,

[@SGTSAPPER88]

My whole family is dealing with this I am currently fighting to be believed even with proven family history and diagnosis. Trying to get a dx my self is so hard

[@MK-mj9gx]

@@virginiagonzales4952 join an EDS FB group.

[@StateofKait]

I’ve been looking for this answer for ten years. Oh my god. I just know that this is what I have. I have 60% of the symptoms listed. My mind is blown

[@KenKaniffFromConnecticut]

I was diagnosed when I was just 11 years old, back in 1998. There are some weeks that my fatigue is so terrible and is almost crippling that I can hardly even walk. Some just don’t understand what we go through with this condition! Some have it very mild, while others have more severe types. My brother and I were both born with this condition. However, my brother’s type is much more severe & affects his aorta. After our diagnosis in ‘98, we had MRI’s and other tests done every 6 months. My test were normal, but when my brother hit puberty, his aorta began to expand and grew larger every few months. Just before the end of his sophomore year of high school, the doctors told him to finish up the year and then have surgery as soon as possible, allowing for his summer vacation to be his time to heal and not get in the way of his following school year. He had open heart surgery and his valves replaced! With artificial valves, he must remain on blood thinners for the rest of his life & he regulates his INR from home with a machine the size of a glucose monitor. His INR must remain between 2.5-3.5 in order to prevent any clots. Of course, there are many side effects in taking blood thinners & we’re hoping that there will be new breakthroughs in modern day medicine that allow for my brother & other patients to live a more comfortable life and without as many side effects!

[@rissthebee]

Praying for you and your brother ❤️

[@MK-mj9gx]

Thank you for posting. It gives new meaning to the need for a diagnosis. I can't imagine losing a child due to lack of diagnosis or lack of care due to not finding adequate doctors soon enough, because of not knowing.

[@sidewalksurf800]

Ken Kaniff, from Connecticut?? 👀

[@shannongreenwell1278]

You and your brother are in my thoughts and prayers!

[@anntunaley9974]

Just fyi, This is genetic so u and your brother would have to have the same type of Ehlers danlos. It’s inherited so whichever type your parents had or carried the gene for is what you both have. His is most likely more involved than yours is. Do u have vascular by any chance , vEDS? That’s the most serious type. I’m praying for both of you.

[@justbambitious1]

I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!

[@lexjordan691]

Justb Ambitious I have EDS and POTS and tried to get tested for MCAS but my allergist said it was too rare and didn’t test for it :(

[@justbambitious1]

Alexa Grady hello I hope you are doing well during this time do you have everything your family needs? I know some doctors just can’t admit they are uneducated in the mcas department I suggest you read the book by dr afrin I suggest you go to a doctor that knows about mcas do you have eds ? Where do you live so I can help you I faced this challenge and I got worse you can look me up on insta justbambitious and I can help hope to hear from you soon!

[@justbambitious1]

Sorry I read it u have eds u did answer my question lol sometimes I read to fast😉

[@lexjordan691]

Justb Ambitious thank you so much, wow I didn’t expect you to be this kind and helpful!! Most people just say “that sucks it took forever for me to find a doctor too” but yess doctors will NOT admit they just don’t have information on it, the allergist that told me MCAS would be impossible also told me I didn’t have POTS (he wasn’t qualified to say that after I’ve been diagnosed by my cardiologist) AND he said I wasn’t allergic to anything even after showing him my allergic reactions to certain things. I said “hey maybe my mast cells are just activated and that’s why I get reactions” and he was like nope you’re just a sensitive person

[@justbambitious1]

Alexa Grady well I’ve delt with this problem for some time and it was a hard road my mission is to help other like me where city do you stay I can help find you resources god bless ❤️

[@BD-to6md]

Stay strong and be well Trevor. 💕

[@gracevictoria2021]

That's what I'm going through. People keep on saying "oh it's not a real syndrome" and I'm like whatever

[@malanamarie5206]

Which is just silly because it can be debilitating especially if you have cardiovascular type since it’s deadly

[@ajxxx601]

My geneticist who diagnosed me said that there will always be people and even medical professionals who will try and argue it's not real but there's so much proof for them that it is real it's just ignorance and stupidity

[@casar6891]

@@ajxxx601 it is extraordinarily common, even with doctors with 16 years of school….many of them just test based on what the hands do, even if the entire body is falling apart, and all symptoms as shown in this video constant problems but only the thumb on the hands bend not the other fingers much so they reject the possibility of it on the basis of hands….which is not how the criteria is carried out. My last doctor said “even if theres a genetic marker that suggests you have it, i would not diagnose you with it because your fingers don’t bend. The doctor who said that works in pain anesthesiology and one of the best in his field…and he is very ignorant and uneducated about EDS, many doctors do not like to be corrected or admit when they are wrong or unaware of updated criteria…even if it means it can help a patient. Makes me wonder how often they care about HIPPA.

[@jimhull4885]

Dr. Francomano is an angel for all of us who struggle with eds

[@doloreslivoti3436]

Praying for you Trevor … your scar looks like you had decompression surgery for Chiari Malformation. I had Chiari surgery and also suffer from EDS … even after the surgery I still suffer but from EDS & Cranial Cervical Instability because of my injuries and the EDS. I was diagnosed at age 46 with Chiari after a few car accidents in 2011, 2013, & 2014. Wasn’t taken seriously about my constant headaches and spine pain… finally diagnosed with Chiari in 2015, still struggled to be heard & helped until finding the right surgeon in 2018 and finally diagnosed with EDS in 2019. Still continue to suffer and cannot find knowledgeable doctors where I live, in NY of all places, seems my doctors in Long Island were the only ones that understand, but one is the surgeon, so he really can’t manage my symptoms and the other was the neurologist who diagnosed me EDS but he has retired. Anyway, I’m sorry to ramble but I truly understand your suffering and all of you who shared your suffering as well… praying for all of you 🙏🏼Stay strong 💪🏼 and keep fighting! 💕

[@shannon0057]

Thank you so very much 😢😢 Diagnosed at 47, now 48 . While knowledge and identification are certainly very!! helpful and gratifying, it erase the many years of physical & emotional struggle I suffered pre diognosis. This video really helped me, mobilized some tears & also gave me increased optimism with my own situation. 🙏

[@randyranderson1621]

I went in for back surgery and the nurse noticed my skin stretched quite far, so I showed her I pull it away from my neck by around 2-3". That nurse was the first person ever to tell me what it was at 33yrs old and every doctor before her had no clue. My condition isn't too serious though, stretchy skin, eat very little as I always feel sick, I can't get a tan and getting to sleep isn't easy either. I feel for this guy.

[@randyranderson1621]

Actually, the worst part is overweight people telling me "I'm lucky" because I don't gain weight then telling me to "eat a sandwich". Where is this magical weight gaining one-off sandwich?

[@AJBlueJay]

Can't get a tan?

[@kusnezoff8705]

feel you brother, been in the struggle for46 years now and my son has it to. mine started at14. tired of the pain keep up the fight brother.

[@januaryjarvis3856]

I’m having issues lately for months with no help. Doctors don’t know what’s wrong with me. Beginning to suspect EDS

[@luthfurrahman7890]

Story of my life

[@quinn2014]

I relate to this heavily plus more. I'm lucky I got diagnosed age 19

[@shannongreenwell1278]

It took me turning 48 years old before I got my diagnosis of EDS, I think when I found it out I had a “ Ah- ha” moment because I was able to piece together why I was in constant, chronic and excruciating pain and I was feeling chronic fatigue. I also have Sleep Apnea which from research is a comorbidity to EDS.

[@oncearosestudios]

42 years here :(

[@SweetChaos01]

I am positive that I have Heds. I have had 2 doctors tell me it's likely, but no one has ever tested me, sent me to a rheumatologist, or helped me with my widespread pain and constant exhaustion at all. I'm 42 and have been dealing with issues since I was a child.

[@Dulcimerist]

Can you self-refer to see a geneticist or rheumatologist who can diagnose you? Print out the diagnostic checklist for hypermobile type Ehlers Danlos syndrome (the most common type) and bring it with you to appointments. It's so easy that any doctor could make the diagnosis, or at least be comfortable enough to write "suspected Ehlers Danlos syndrome" into your medical records in order to guide your care with other providers.

[@MrTurtluv]

I wasn’t diagnosed until 40. I’ve had symptoms since I was 10. In that time, I’ve had 3 knee reconstructions, Bankart repair on my right shoulder, cardiomyopathy and thyroid disease. To look at me, you’d never know, because I look like a kid🤣

[@MK-mj9gx]

Bankart Repair?

[@newnimprovesT3]

Are those things linked to your Eds?

[@frangriffiths5290]

Do you have dislocated joints

[@thegreatkaspianbloom1106]

This is the first person with EDS who's not a woman of European descent that I've come across on the internet. I know it happens to folks of all walks of life but it seems it's almost always Northern European girls and women.

[@debwolford5663]

what surgery? My son-in-law has all the symptoms of EDS, but he is on a waiting list to see a genetic doctor for a diagnosis. So frustrating.

[@childofgodlove2875]

Whats the name of this doctor?

[@luthfurrahman7890]

Pain since age 15 diagnosed at 23 For me mild to moderate to severe a progressive condition

[@AuthenticMage]

I’m trying to get diagnosed, but don’t know who to see in NC

[@Dulcimerist]

Find a geneticist. The Ehlers Danlos Society also has a physician directory on their site if you want to find an EDS specialist in your area.

[@beverlyquigley6608]

Thanks for sharing. I believe my son has it and I passed it to him. I have Hyper POTS and hyper mobile spine. All my boys have very issues of Hyper POTS.

[@carriannereid]

47 years for me to be diagnoised

[@simonram8505]

What surgery? Did he have CHIARI?

[@doloreslivoti3436]

His scar definitely looks like he had surgery for Chiari Malformation… I had the surgery in 2018 and I also suffer from EDS.

[@vibhudamani3113]

The syndrome is divided into 10 types depending upon the tissue involved and its clinical presentation...Learn more from www.pediatriconcall.com/articles/pediatric-dermatology/ehlers-danlos-syndrome/ehlers-danlos-syndrome-patient-education#1038

[@quinn2014]

13

[@Alesha_Lewer]

I think I have ehlers danlos. I have most of the symptoms but none of the doctors have ever been able to explain why. What should I do? I can’t just go to my doctor and say I think I have this rare condition. Do your tests and tell me the results

[@simonjesusthehealer4515]

What are your symptoms I feel I have the same thing. Sorry for time I ask you since it's being 2months long

[@Alesha_Lewer]

@@simonjesusthehealer4515 very flexible joints and sore a lot of the time, I can dislocate some without trouble, my skin is kind of see through

[@simonjesusthehealer4515]

@@Alesha_Lewer please can we talk more please I beg you reach on WhatsApp [phone] and email bonelessimon@gmail. Please I need a some I talk to. Hope you don't mind

[@ryanscott5126]

@@Alesha_Lewergo to a rheumatologist to get a referral to genetics. Definitely find one who has had other EDS patients

[@Oilofmercy]

@@Alesha_Lewer sounds like it. Go to a geneticist. Good luck .

[@vynedvyne59]

Low dose naltrexone has helped with the pain and given a lift out of the pit ❤

[@juliehayden123]

I believe I have this, but my rheumatologist says I don’t. What should I do?

[@elliet7295]

Have they gone through the criteria with you and beighton scale?

[@MN-zh2vd]

Find a different rheumatologist; preferably one who isnt such a dismissive ssshat. An orthopedic surgeon may be a better bet too.

[@Dulcimerist]

Find a geneticist. The Ehlers Danlos Society also has a physician directory on their site if you want to find an EDS specialist in your area.

[@mydogeatspuke]

@@elliet7295 even if you score 5 or more on that, you're unlikely to get a diagnosis or be referred for testing. Lots of people are hypermobile and experience no issues, so many doctors assume the issues must be related to something other than the hypermobility.

[@joseehill5994]

My chiro said it wasn’t in bloodwork so can’t be EDS…??

[@Dulcimerist]

Ehlers Danlos syndrome doesn't show up in bloodwork! Sounds like you need to find a new doctor. A geneticist would be the best choice. Check out the diagnostic criteria checklist for hypermobile type Ehlers Danlos syndrome, which is the most common type of EDS. That checklist is how the most common type of EDS is diagnosed.

[@constantlychanged]

hEDS has no currently widely accepted biomarkers, but the other types do.

[@maxs_420_grow]

Neurologist diagnosed me..

[@mydogeatspuke]

@@maxs_420_grow my neurologist said I had some kind of connective tissue disorder and discharged me because it's not a neurological disorder, then failed to update the system with anything we discussed, so it's like it never happened. I'm in the UK though, out health care is free and you get what you pay for.

[@deepakdhoni8476]

How to cure it ...

[@cannonball6372]

The cure is L- ornithine

[@ilovesmysangsomsangsom3500]

There is no Cure for EDS.

[@stayaz8789]

@@ilovesmysangsomsangsom3500 yet

[@shannon0057]

Low dose naltrexone apparently helps Quite a bit with pain & thus fatigue. Again, the issue remains finding a knowledgeable and compassionate Dr.

[@hendrikje5952]

You can’t. Prolotherapy might help quite a bit.

[@nikki10114]

Dna mutates for no reason acxording to dr pradeep chopra

[@gaylecheung3087]

♥️🇨🇦🌎

[@nikki10114]

Not just hereditary anymore

[@malanamarie5206]

Really? Are they going to take it off the criteria I’m going to talk to my doctor next month to try and get a diagnosis and the only family member that I have diagnosed is a second cousin

[@ilovesmysangsomsangsom3500]

What an amazing statement to make......... Your reasoning for this is? So it just happens to appear in people then? So according to you, the form of EDS I have, is all of a sudden not Hereditary and not been passed down through generations of my Family ( which is 100% proven through Genetics ) and the high percentage of me passing it on if I have Children is now not the case as you’ve said it’s not just hereditary anymore....... WOW!! So what Qualifications and Doctorates do you have to back up this statement?........ This should be very interesting!!

[@saturationstation1446]

@@ilovesmysangsomsangsom3500 starvation could easily induce something like this. your body will break down that stuff if you do way more than you are fueling it for for too long. idk how people have trouble grasping super simple things like that besides maybe just having never seen or felt long term starvation. in all likelihood, very very very few health problems are "hereditary" .. whats more likely is that problems come from being raised in the same environments and eating the same foods etc. doctors are way too short sighted when it comes to being as thorough and unbiased about all variables that effect the problems as possible. its almost criminal how bad of science that is lol. the entire idea of hereditary disease is a relic of eugenics and has almost no solid scientific evidence since its never been studied with double blind methods...

[@maxs_420_grow]

Ngl when he talks about the research hes doing i find the research so depressing when i try, despite seeing im not alone... idk. just learned 70% of eds people are women today, makes sense why men dont talk much about it now.