The perseverance of the chronically ill may be the most underestimated phenomena on this planet. Seeing your relief is magnificent. Love to you & your family.
I almost cried when you talked about how validating it feels to have a solid diagnosis! I have hEDS and I can only hope one day they'll find the genetic marker.
So true and I hope so as well. I am going to be evaluated for If I have HSD or Classical, Vascular Or Hypermobile EDS because I was told by a PT That is am more liekly than not to have either EDS or HSD. If hEDS Was testable genetically then it would make things so much easier
As an hEDS person, I absolutely can't wait for the day when they find the gene for hEDS. That wonderful feeling of nobody can question my diagnosis will be fantastic, when they figure it out.
I so hear you, I am hypermobile n so sick of being fobbed off al my life. If a Dr was 'this is beyond my understanding' ie owing the gap in their understanding its fine but they don't they gas light me n just tell me its in my head n ignore symptoms n reactions so sick of not being ignored.
Amanda H That’s an unrealistic dream, as the gene will do nothing to cure there lack of apathy and common sense. Thought I was past this bull crap but no. Old SOB wants to educate me that it’s just an excuse that I need “to get over.” Silly me, as I hadn’t thought to just getting over it 🤔
I was wondering if the PAX6 Gene could be part of EDS? When I was born legally blind from birth. At the same time I was born without that sphincter between my stomach & esophagus and I have had other problems like as a baby I had pneumonia. Later on in life I was diagnosed with an Obstructive Pulmonary Lung Disease, Sleep Apnea, Neuralgi, Urinary Incontinence, Esophageal Reflex Disease, (SDGW) Spatial Diffused Global Weakness, Osteoarthritis of multiple joints, Psoriasis, Legally Blindness Disorder of eye Nystagmus Pseudophakia of both eyes, Glaucoma Secondary Unspecified Laterality Indeterminant Stage.
I appreciate you mentioning that EDS is a spectrum disorder! I have hEDS and I have never, yes you heard me, never dislocated any of my joints! People are always like, wait then how do you have EDS? And that frustrates me so much. I sublux often but just don't dislocate which is honestly a huge blessing. Glad you now know for sure what type of EDS you have!
daily cait- What exactly does sublex mean? Would this be the same or similar to having joints that crack and slide easily everytime you move them? The reason I am asking is because I am currently undergoing testing for Mast cell Activation Syndrome. I also have a rare autoimmune disease called Behcet’s where my immune system is attacking, inflaming, and ulcerating all of th bellows vessels throughout my body and also have primary chronic adrenal insufficiency (Addison’s disease) caused by autoimmune attack to my adrenal glands. I have been very sick since I was 12 years old (just turned 31) and have suffered in severe chronic pain for as long as I can remember. At first I always just assumed all of my issues were autoimmune related, even though now my specialists tell me that my blood work has shown great improvement in the systemic inflammation, yet. am still in bad pain all the time and still very unwell. The more I have learned about MCAS the more I realize that each of my ongoing symptoms can be explained by that, but also possible by adrenergic POTS also, which I know can go hand in hand. But then I started learning that these conditions are often never just found on their own, but are part of EDS, not typically by autoimmune diseases. My joints have always cracked whenever I move them including my jaw whenever I chew and i just recently realized that I can bend my thumb to touch my forearm and nobody else I know is able to do that. I always just assumed my bad arthritis from the autoimmune is why my joints are like that, but even after having the arthritis settle down they are acting up just as much as before. I also have a lot of skin issues including abnormal scarring, and strange red strain or stretch marks that appear inodd places even though my weight has been stable. My skin is hyper reactive to everything but also is very delicate as it tears very easily. I have attacks where my skin will suddenly just swell and crack open by itself and start bleeding without even touching it. No doctor has ever even brought up EDS to me, even during my fight for my Behcet’s diagnosis and when my joints were very very bad. i have also had so many doctors over the years not believe that I am suffering in as much or as bad of pain as I am because they think that Behcet’s doesn’t cause that severe of pain all the time. I don’t think that I was misdiagnosed with it as I do have all the symptoms of that also especially the severe ulcers, arthritis, and systemic vasculitis, but my specialists along the way have always felt there is something else going on inside my body. My new endocrinologist recently said to me that I am a very unique and complex case and that the doctors need to peel all the layers away one by one. Everytime they find an explanation for one thing or a new diagnosis, it clears the way for the next issue to be understood and diagnosed. The problem is that we have just moved to a new province (I live in Canada) recently so all my doctors are brand new and my new GP doesn’t really know or understand my whole history (even though I have told him everything more than once) and he still doubts some of the stuff I have gone through until he has proof of it and reads about it in my old records he was sent. He won’t even just send me to an immunologist for proper testing of my mast cells unless a Tryptase test comes back highly elevated. But even with that he has told me thateven if it’s high, it still doesn’t prove I have MCAS. So it’s beyond frustrating because I am sooo sure that this explains everything. When I told him about my joints, he examined them very quick and was talking while doing it so he didn’t even hear them cracking. And he just says they looked really good, no sign of any inflammation. When I asked him why they crack everytime I move them, why they still kill me to death even without any active arthritis, and why they slide in and out of socket, and he just looked at me like I was a nutcase. He says they never cracked nor are they loose. I am willing to give him a chance, but if in the end he isn’t willing to help me by searching further into things, then I will have to move on.
Rayne sommers Do you watch Chronically Jaquie vlogs? She has a lot of info there on EDS and corresponding conditions/ symptoms that may help you. She also keeps a notebook to bring to her doctors which helps a lot. I hope you can get a genetic test for EDS. Your skin alone sounds like you probably have the classic type. I hope your new doctor starts to get to know you better soon and listen to you, otherwise I hope you can find another that will.
I’m like that as well, I have hEDS and I’m not super flexible nor do I dislocate frequently, but I have this general instability in my entire body and subluxations happens frequently. I have only had a few dislocations that may be considered full dislocations throughout the years, I’ll be 33 in less than 2 weeks and was diagnosed in September 2012 (think it was 28th even). My EDS is pretty severe when it comes to pain and fatigue and instability, but I do not have gastroparesis or mast cell issues etc. that can be common in EDS. I do have some issues with POTS and suspect CCI/AAI and tethered coed syndrome, but other than that my EDS is mostly pain, joints and fatigue. I’m bedridden most of the time due to the pain and fatigue but yeah, if comparing with someone else with hEDS I can be seen as both mild and severe depending on the other person. I know people who can work full time and live active lives, but I also know people who are in hospital a lot, yet the diagnose is the same...
I only sublux too but they tend to take a bloody age to go back in. My main issues with hEDS is my insides like bowels and heart and I’m just in bed all the time 🙃
In the future could you consider not putting music behind your video? I have an auditory processing disorder and it makes it very hard for me to hear what you are saying through the music. I’m so glad that you finally got an accurate diagnosis.
Have you tried having the automatic subtitles on? I don't have a processing order but cognitive difficulties due to my mental disorders, and it helps me A LOT to see as well as hear the words. It's not 100% accurate though, so it can be a bit tricky sometimes, but in general it helps me a lot.
I agree with this! I watch these videos at work with headphones and can't watch subtitles but the music is very distracting and the repetitiveness is anxiety causing.
Im glad you found your answers and validation Mickey. I know exactly how you feel, the fear or invalidation can sometimes be more crippling than the physical symptoms. I have talked to so many “zebras” who were too afraid to even go to new doctors for fear of being questioned. It’s so sad to see that others in our community are now doing this to one another. How can we expect to be taken seriously if we are tearing each other down? Thank you for talking about this issue. Also, i’m so glad you no longer have to worry about vEDS. I know that is always a huge fear ❤️
@@michaelsveneriksson4813 , it's not a protein as I understand it. It's the mitochondria of the connective tissue cells being mutated & thus not making enough power(I still can't envision how it makes power). There is no known way to replace or unbend the mitochondria. I have noticed a lot of EDS folks mentioning they start to show symptoms after an allergic reaction or two.... I foudn an article last year (medical journal - my new favorite reading material)every allergic reaction makes the mutation worse. After I read the medical article outlining this, I realized my degrading health could be marked by 7 allergic reactions from 17years old to 38years old. The one when I was 38 almost killed me and I now have the body of a 70 year old person despite high muscle tone. I am blessed that my physiology is responding well to supplements but it's like duct tape on a leaking dam.
@@sam12587 huh? I already fit the answers for heds as a kid, but I had no clue. I now have multiple other diagnosed issues. I've also recently experienced a massive allergic reaction which has led to multiple additional allergic reactions. It's as though the dam broke and my body will no longer tolerate what it chose to suffer through (unknowingly) prior. I don't know where the mitochondrial proteins came into this particular string of comments, but either way they would help this issue or my current diagnosis. Could you please tell me more?
@@kellyb8319 Here's a good place to start - me-pedia.org/wiki/RCCX_Genetic_Module_Theory and edsinfo.wordpress.com/resources/mitochondrial-disease-another-invisible-illness/ and www.ncbi.nlm.nih.gov/pmc/articles/PMC3625384/ If you need help on finding more data let me know. Knowledge is power and possibly increased quality of life. My geneticist told me to have a diet that allows my body to make the best collegen it can - CoQ10 & glucosamine he said is supposed to help but I'm still dubious, lutein I do notice a positive effect. In my personal experiments I've tried three eye or vision supplements and it had a positive effect on my body - just not my bank account - I think there is some undocumented relation between the components for eye health & other bodily components ( mitochondrialdiseasenews.com/2016/11/16/protein-linked-mitochondria-speeds-age-related-visual-disorders-mice/ ). Turmeric with pepper is a good one to take 300-1000mg/day -in addition to inflammation turmeric also speeds healing(for me at least) & the pepper has a chemical that makes the curcumin in the turmeric stronger. If you do pills, the pepper can be separate from the herb - I usually put it on my food after I take the yellow pill. I've also experimented with horsetail but don't have enough data to report much either way on it. Look for " collegen building " ideas and " inflammation fighters ". New research is coming out all the time for ideas to try or avoid. Stress seems to have some kind of link to allergic reactions (look up Mast cell) so try to do all you can to avoid stress (Ref www.rccxandillness.com/). With lifestyle changes I've been able to keep my diagnosis to one set of letters - POTS and Mast cell really want to set up camp with me. I have to tell people " no " more (which is hard ) and have to allow my self to rest more so my body can heal from normal moving.
I don’t have EDS but I have other chronic illnesses (GP, psoriatic arthritis, biliary/pancreatic condition, asthma, etc), and with each diagnosis, having testing that came back showing conclusive evidence that I did in fact have it, was a relief. It’s hard enough being sick but when you have a definitive diagnosis, nobody can tell you that you’re just overreacting or that it’s in your head or that you’re being dramatic.
Congratulations on finally knowing the truth! Having a chronic illness sucks, but having a chronic illness and being undiagnosed or misdiagnosed is just awful. Correct diagnosis is such a positive thing, I'm so happy for you! ❤
To have something concrete and definitive to point to must be such a relief! Especially with so much disbelief and being told I’m fine, even though I really really was not fine at all, it really gets in your head after a while. I’m glad you have answers and I’m glad that answer is not VEDS, not to minimize CEDS at all!
Validation feels soooooo good!! Thanks for all of your efforts to not just to understand your situation but to also help everyone else become aware of EDS.
Your videos have given me so much comfort and relief during my struggles with diagnosis. Being able to hear someone who understands how I feel..... is honestly such an unknown concept to me. Thank you for sharing this and all of your videos you’ve put work into. It helps with not feeling alone in it for sure. So happy you got further testing. It’s kind of beautiful to see you have clarity finally on something that was a scary part of the last couple years. I know that feeling of not knowing all too well
So glad you know about this now. I have cerebral palsy and some other issues that my friends with it don’t have. People often misunderstand spectrum conditions. I love the videos you make.
I have CP and chronic pain and what could be either fibromyalgia or a joint disorder. Most of the people I know with cp just have chronic pain and doctors don’t really know what to do with me because they just think it’s all part of having cp
any one without a disability on some spectrum usually doesnt understand how large they are like im myself autistic but i dont seem like it on the surface.
I know someone with CP with the same issue! He doesn’t have typical visible spasticity, and uses a wheelchair or his arms to get around. I also have disabling chronic conditions.
I completely understand the idea of validation. I suspected I had EDS for years and was told no and dismissed by so many doctors and people in my life that finally being diagnosed by the geneticist was such a relief and it validated everything I was going through so much.
Pre-Med Maddie totally relate to all you said! The validation, after a life if pain, drs dismissal, 3 yrs suspecting I had Eds, 9 months waiting on genetics- NOW I can say I gave THIS!
thank you for the reply. and yeah. im beginning to develop early arthritis so my "hypermobility" is turning into normal range of motion. likely need genetic testing done to determine type
I’m so glad for you to have your answer!!! It’s so troubling and mentally exhausting when you don’t receive the validation that of course you do absolutely need! To actually know that this is the reason why you are the person you are. To know that you stand on solid ground as you continue to research and know not only for yourself, but for everyone else who is going through a difficult time with this form of this particular condition, you are finding real answers for your very real condition. I’m so happy for you to finally understand the reason why!!!
Thank you so much for this video!!! I have HEDS and it is difficult to get doctors to believe my diagnosis. Most doctors in my area no nothing about EDS. I have other medical issues that could indicate a different type and I have a history of EDS in my family but I cannot get my doctors to order the genetic testing. It’s so frustrating! They tell me that how they treat me won’t be any different so why spend the money to do the testing? Like I said, they have no clue. I’m so glad you made this video and I know I’m not alone in this frustration with doctors.
How do you know you have it for sure without the genetic testing? Thats how you get diagnosed where I am from. I don't understand they say you won't be treated differently since dislocations etc means you can get help with support in certain places and with vascular you most certainly need extra care. Can't you pay yourself and get the gen test done at a private hospital? All the best to you.
I am so happy you found your answers. I've been watching your channel for so long wondering if one day you'd find that relief and that you'd find peace of mind. EDS is never anything to celebrate (obviously), but I'm so glad you've found your answer.
I'm so glad you have solid answers!!! As for people who tell others "oh, another person with EDS🙄"... Yes!!! Because awareness is working! THIS is what we've been fighting for! 💜
Exactly! My thumbs subluxate (it also cause me pain when holding things in pinch grip), my mom has always told me how soft my skin is and it's always been an "eh, whatever" kinda thing, just the little aches and pains that you never bothered to get checked out. But now I also know that my skin bruises abnormally easily and that it might all have something to do with each other and that there are things like splints that help with subluxation, which would improve my quality of life if I had access to them, so I'm considering consulting a doctor about this after being just a little bit different from others for 19 years. Had I not found out about EDS, I would never bother.
I know exactly how you feel about having genetic proof/lab proof of disease. It is such a relief to get those answers and to be able to confidently stand up to those doctors and other people and say, “I know this is exactly what is wrong with me”. I’m so happy you kept pushing for answers for yourself but also for your whole family 💜 Best of luck with all the new research you will be doing!
I just started homeschooling with a terrible case of anxiety and you’ve been a really big inspiration to me so thanks for doing what you do and keep on keeping on
I'm so happy for you darling! Validation is HUGE! For a long time I've wondered if I have classical due to my skin things (everything you described happens to me) but genetic tests are just so damn expensive and I've been lucky that my surgeons have always taken my accommodations (extra sedation, extra pain meds and more often, staples not sutures, CT machine for more precise procedures so less cutting is involved, someone to watch my heart, someone to watch my brainwaves in case I wake up, etc - I'd really love to know if there's any other precautions in your protocol though because I'm due for three surgeries this year) Just fyi: you can have aeortic dissection with both hypermobile and classical, as well as other types. In general anyone with EDS should get their hearts regularly checked. I was recently in the ER for pain but my heartrate was 150 (which is not crazy high for me but from their point of view it was), so a cardiologist came and talked to me and described all the symptoms of aerotic dissection and told me to get my heart checked asap. So yeah even with hypermobile or classical, etc it can be a serious concern. So fellow zebras, if you can, get your heart checked! And I love you all and you are all valid!
Heya I’m so glad you’ve found out exactly what you have, I know exactly how much of a relief it is when you get the right diagnosis!! I way diagnosed with none diabetic Hyperglycemia when I was young, turns out though a ton of pushing and arguing with the doctors it was celiac disease. It’s frustrating when the doctors don’t believe you... and as I’ve gotten older its become more severe. To the point where i can get warn affected by the smallest of things. But i still horse ride even though I have a much greater chance of breaking downs and I still love to do as much as I can even if it does ware me out and I take a week long nap after 😂😂. I know this is an older video but I’m so happy for you and I just wanted to let you know that!! Your videos inspire and bring me so much joy!! I also understand the hate in the community when I told my story on an amino app for celiacs I got a lot of hate from people with more mild cases, I’m also guessing they were quite young as well judging by their language etc. But they didn’t know that some forms do effect your blood sugars and it can be mistaken for hypo or Hyperglycemia. But there was also a lot of support and people sticking up for me which was nice to see... I hope you never get any hate for what you do because I think it’s really important to show people that although we have these life changing disorders and diseases we still live amazing lives ♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️
So happy you got mental relief. I WISH I could just get someone to see I have EDS. 43 and still struggling and getting much worse. Bless your soul. Stay tough.
So much empathy from this end girl... waiting for genetic testing for Eds also, and I've had so many doctors tell me I'm mental for being in so much pain. Your video gives me hope that I'll find answers in testing as well. Thank you for inspiring those with no answers yet to never give up and never stop asking questions .
You are so brave and this was so touching. You should be so proud of yourself for getting what you needed and I completely relate to the relief of diagnoses
You are so strong. I watched your "day in my life" video and cried just seeing all the things you have to do and I just couldn't even imagine being in your shoes. So much respect for you ❤️ (p.s. You're REALLY pretty!)
I'm so happy for you that you got the proof of your illness. It really hard knowing that you're sick but never being given a reason for exaclty why these things are happening. All my life I've had so many diagnoses thrown at me followed by the word idiopathic. Even though you know what youre going through is real, it leads to the question of why and if this is all in your head. Hearing a reason and having diagnostic proof if a biggest feeling relief. Even if it's just proof to yourself. I can see the happiness in your eyes in this videos from the reassurance and knowledge. I am overjoyed for you. Even if treatment doesn't change at least you have answers now, it's not as much of a question of what is going to happen in the future. It turns into a spiral of fear for things that you could have, which can't be proven otherwise. I'm rambling but honeslty, I'm so happy for you. You are so luckly to have an answer so many of us chronic illness suffers crave, hoepfully that will happen for all of us one day!
Very happy to hear that you have a clear diagnosis now. I fully understand how shocking yet validating this is. Hope it will bring clarity to your treatment and hope it will perhaps bring along some things/insights that make your life a little easier!
I'm so glad you don't have vEDS! Of course having Classical doesn't change what's already happened to you and your body but I really hope that this new confirmation diagnosis may change your care so you don't suffer so much from not on
I was diagnosed with Hypermobility Ehlers-Danlos Syndrome. I've had more than one doctor say you can't have that because you don't have dislocations, But only a small percentage of people actually have dislocations. I get hip subluxations and its painful. Anyways I am getting a echo this week to check for signs of vascular after a collapsed lung in April. And have referral to see Geneticist. I know I have hEDS, But its gotten alot worse this year so were checking for the other 12. I'm glad you pushed for the testing! And so happy its not vascular. I bet you feeling so relieved knowing now. You are so strong and inspiring. I follow you on Instagram. And I hope you continue your RU-vid videos, I enjoy those too. Praying for you for good days and better health and that your current feeding tube lasts more than a few weeks!
Girl, I hope that everything get better.....I mean.....everything will get better. Be strong, be brave and do not give up. I give you all my help and support, from Costa Rica. I will pray for you, I promess.
So glad you were able to get the genetic blood test at Mayo and I am also trying to get the genetic testing as is my sister and depending on the results we will have my mom get tested and possibly my grandma on mom's side. Thanks for mentioning that it's a spectrum disorder. I am so glad you have validation. Your blood said exactly what you have. I am glad you were able to get help. I am afraid of it as well. I'm getting lots of clots so vascular is a type I need to be tested for as well. So thanks for giving me some gumption to push for further testing for myself and my sister! You rock Mickey and so glad you have a concrete answer. 💙💙💙💙🙌🙌🙌🙌😃
Thank u so much for the update. I am so glad you have a diagnosis that you now know for sure. You inspire me! Also I have to say you have the prettiest, longest eyelashes.
Sad thing is that people misdiagnosed all the time. I love how strong you, you seem to have a great attitude about everything you are going through. I have dystonia witch is abnormal muscle disorder nothing like you have and I get upset cause it’s annoying and frustrating but then I see people like you who have something so much worse than me and it makes me think of how lucky I am so thank you
"I have proof! No doctor can ever doubt me again." Gosh, I wish I could say that too. I have RSD/CRPS and most of the medical community I come across haven't ever heard of it or they've seen/heard the acronym but still don't even know what it is. I also totally feel you about surgery requiring extra protocols and being a serious pain to get through to people. SO glad you got your genetic information at your fingertips! Best wishes with your health!
I'm so happy you got a proper diagnosis, I'm not sure how I came across your video...algorithm I'm assuming but I'm glad I did! I am currently dealing with my health. I am constantly sick in so many ways. My body hurts every single day, my joints pop or lock up, severe cluster headaches, nausea, issues with ibs, pain in the base of my skull and neck, weak muscles pretty much everywhere, tachycardia... it's just crazy I've been hit with most of these issues just within the past year. I've just about given up with doctors, my first pcp tried to say it was just ibs or that I was imagining my pain. I finally got a few diagnosis, but we are currently still awaiting more. It's so frustrating because my issues keep getting worse and worse as time goes on. Now I'm dealing with lung issues and mast cell symptoms. I've got a referral in for EDS testing, but the strangest part is I was hypermobile as a kid but I'm not at all anymore, so I'm still on the fence of a possible EDS diagnosis if I'm not as hypermobile as I once was.
How Awesome is that to finally have some closure on your diagnoses! Your parents are so lucky to have such a talented, beautiful daughter as yourself with sicknesses and all...I'm sure they are very proud of you....I'll keep y'all in my prayers...
I am so happy that you got your much needed answers! Having that proof is an amazing feeling and it is very rare for us zebras. I am going back through and watching your older videos. I have classical EDS too! Mine was diagnosed by a geneticist and genetic testing. I got my EDS from my dad as well. My sister does not have EDS though. My skin is also super fragile, and for my surgeries the surgeons have to leave in the stitches for at least 5 weeks or my skin will rip open. My scars also always stretch out and dissolvable stitches don't dissolve because my body doesn't know what collagen is lol. Our skin and organs just can't stay together! HEDS is the only "common" or type of EDS that is not considered rare. Much love from a fellow classical zebra!
Just fell over your channel by chance and watched this video. I do so understand the wish, to get a diagnoses, that can be proved, so no one can ever put doubt into how you are feeling, just knowing, that what you have known or feelt about your own body has right all along, that is extremely validating.
Hi, I just found your channel two days ago and I find it soo great! I've already watched a lot of your videos and I think you're a very positive person and we can learn a lot from you, your family and your experience :) Thanks! And hugs from Poland :) And of course I pray and support you as I can
Your smile always keeps me watching. You are great at educating. I'm looking forward to more videos. I love learning. I have fibromyalgia and there's a spectrum there that has been frustrating at times, but understandibly when people aren't informed or for me, not feeling like I know how to articulate it well and thus feel like nobody understands me or believes me. I'm glad you have the specific Gene info so you can dive into research. I love seeing you!
Thank you so much! What I did to help myself explain it to people at first was to write down what you wanted to say to describe your condition. Then once you have it exactly how you see best, start memorizing it. Practice each day once or twice, until one day someone asks you about your health and you already know exactly what to say!
Girl I feel you. So many people in my family have it and I’ve seen first hand how it can affect people yet people still think it’s a bit of nothing with some doctors thinking there’s no such thing! Keep fighting you’ll get where you need to get. I’ve been misdiagnosed with all sorts al my life now being diagnosed with CMT after genetic testing no one knows what it is. I’m spreading awareness about invisible disabilities like fibro and CMT and will continue on doing so until people know about them and that disabilities don’t discriminate and you don’t alway have to ‘look’ disabled. What does being disabled even look like?
How could anyone hate you. Your amazing and inspirational, especially to those in the chronic illness community. Keep doing what your doing, sending all the love your way xxxx
I am so stinking happy for you! I pray that one day I’ll know what that feels like. Hearing this made want to cry with joy that a Spoonie 🥄has real answers.🤗💙 praying for you love.💞 I need these tests but I have NO clue how to pay $$ for it though. I’ve struggled with hyperextending and dislocating joints for over 10 yrs.
I'm glad you got the answers you need! I haven't seen you before now, but I can tell you have so much love and positivity in your heart. But fun fact! I found you recommended under the pets topic on my home feed. Not sure what RU-vid is doing!
Good for you for being your own advocate!! It’s so important to go with your gut feelings about your health, regardless of what your doctors are saying. They’re humans too & can make mistakes. Glad you went through with the testing & now you can get the correct protocol! Xo
I love you’re endurance and I love your work. I kinda knew that you didn’t hyper mobility. I also have classical and it’s effects a lot of stitches and bruising in my body. I love how real you are in this video. You’re happy and shocked and excited. You’re my favorite I love you
Love love love love love and more love love LOVE LOVE LOVE LOVE to YOU and my TOTAL BELIEF IN YOU and ALL YOU FEEL AND SHARE!!!♡ (That forever officially erased any stupid people comments) I know too well what you go through! Mayo is where i go too. Your reality and bravery helps me deal with all my stuff... It is so very very difficult at times to keep hope. THANK YOU!!! TONS of PURE LOVE to YOU!!!♡
I'm so happy for you, validation when it comes to your health and body, and why something is a certain way is literally the best thing in the world, that little bit of relief of knowing why and what is the best. So happy for you💞 and thankful its not vascular 💞💞💞
Yay for your proper diagnosis! Even though my docs said hEDS and we're fairly certain it's hEDS, I'm still pushing for genetic testing and I have an appointment next month. I want to be sure. I think everyone should get genetic testing if you're diagnosed first with hEDS - just to make sure.
Having been diagnosed with hEDS, hearing your story rings so close to home. Not having a clear concise gentic test to look at, none of my doctors even testing for any of the testable types, fills me with immense "what if" anxiety. Its such a terrible feeling of unknown, even with the diagnosis through the observational testing
Sitting here bawling while watching this. I'm waiting to get into a geneticist after 35 years of being misdiagnosed. I read about eds last year and I'm positive that is what has caused every problem I've had. I can't work and don't have the validation I want to show others why I hurt so much, why I have so many medical issues, why I'm so exhausted... So happy you have your diagnosis from the geneticist.
You've described what i go through. I was also dx with hypermobile type, but have so much of the classic symptoms, yet I am hypermobile. I often wonder if they should be combined. I had testing for the vascular type and thankfully it was negative. Good for you listening to your body. I'm happy you have the right direction now. Great video. New sub. 🤗
I haven't even gotten to the part where you say what type you have, but you just said that you're filming without getting ready so I want to say that you look great. Love the hat!
I have a rare bone disease. OI ... I soooo get every word and thought you shared here. People can be so amazing but they can also be amazing jerks. I hope you get nothing but but love here and I wish you all the best. Start strong because dang ! You got this.
Thank you so much for sharing your story! I have chronic Lyme and have never been able to get any validation for my illness because chronic Lyme is so taboo in the medical field. Congrats on the validation I can imagine how relieving that is. I also have a mutation in the COL9A3 gene, and the docs know absolutely nothing about it in their words "it may do something it may not, we don't know". Genetics is such a complicated field!
I have neuro-Behçet’s disease induced Klein-Levin Syndrome and Dystonia. I struggled so much when I was a teenager and as a young adult. I was misdiagnosed over and over again. It took until I was 29! When I got my diagnosis, I cried. Finally, it wasn’t all in my head. I’m not crazy. I’m not making it up. I’m 33 now. Since my diagnosis, my quality of life has drastically increased. Of course I have good days and bad days. I’m so happy you’ve gotten closure and are now getting to move forward with the treatments that will help you. Keep your head up!
Listening to your videos makes me feel less alone in this struggle. I'm so glad you were able to get the genetic testing. I have all the same fears and I too, have doubters in my life. I may push to get genetic testing, but my skin does not tear that easily, just soft and stretchy and rolls off a lot after a shower. I have digestive tract issues, as well.
so pleased for you to get your answers, I'm in the hEDS at the moment but waiting for tests in June I hope to get some answers too x thanks for your video new subbie 😊
So happy youve found answers. I look forward to your updates. I have the same COL5A1 mutation as well. So tired of Drs claiming knowledge of heds and know only enough to be dangerous.
I just found your channel because I found out that I might have Marfan syndrome or I could have EDS. I’m so scared about what might be happening with me. I also dance and figure skate and I’m terrified I’ll have to give those up. I’m so sad that you were forced to give up your sports. I am glad however that you found your answers and validation and I hops that things get better and that your health improves. ❤️
It is so relieving you have answers and that you don't have vascular EDS. I hope you will have the special care you need. I was diagnosed with hEDS like one month ago and it's true, I saw SO MUCH people invalidating people who don't have genetic testing, especially for people with the hypermobile type. I am a Northern Frenchwoman and I go to Paris for my EDS appointments. As far as I know, most people with hEDS go to Paris(from all over France; I even met a Southern Frenchwoman there!) because our local special units just do nothing although they know how to do testing for Classical EDS and once it's done (after 2 years of waiting, at the most)... In Paris they don't do the genetic testing but they give us treatments to improve our quality of life. Sometimes, I feel like the EDS community is just giving so much pressure to each other. These doctors work on EDS for years and they can't be fooled. Let's relax, we all have EDS and I feel like if someone tells you "Oh you don't have EDS because you don't have genetic proof!!!" is like a doctor telling you it's all in your head and so on and so forth... People are ignorant and mean.
When I was diagnosed I was diagnosed with multiple types then it was 1,2,34,&8. I'm so happy you pushed for your testing and got your answers. Feels great to have the answers.
What a tremendous relief to know why your body has been so sick… and hallelujah to no more bullying from doctors… hang in there and thank you for this video.
Keep up that positive attitude & stay strong Beautiful. You are in my prayers always & have my support 100% Carlos Millan from California. God bless you...
My genetic testing shows I have vascular and classical. They did imaging on my heart and there are no complications! Because there are no problems with my heart, my geneticist says I don't qualify for Veds. They said that they've never seen the gene for Ceds mutate the way it did in my family, so I can't be officially diagnosed with classical type. I thought I had answers, but now there are more questions.
I have veds and there are some complications with my heart beat and my veins leak mainly when it's hot but I was never told that there has to be something visibly wrong with the heart in order for a diagnosis
I have watched this video many times as a EDSer myself. I was diagnosed after many many years with a "severe case" of hypermobility type by a geneticist. I 100% agree with so many of your points! Now I'm in a similar position. I see a dr that is incredible with EDS and have seen him for years. In my visit a couple days ago, we looked things over again and I mentioned the new types... we are now really confident that I actually have the spondylodysplastic type. It's scary, but it explains a lot. I'm on disability and unfortunately they won't pay for genetic testing, but my dr thinks he may have a lead with a company that offered to help. So hopefully we will know for sure soon. He thinks I may also have mitochondrial disease and possibly a couple other things. I imagine it feels great to have solid proof! Silly that we feel we need it for others, but even a clinical diagnosis is relieving! I'm having a hard time finding any info, especially videos about this new type. That's how I came across this video again! Still love it! Hope you're doing well ❤
I'm waiting to go to the geneticist to confirm my EDS at the moment, and I am honestly worried about people not believing me for that very reason. But I think more people are getting diagnosed because of better access and awareness, because it mimics so many other things people aren't aware that their problems could be caused by something else. I've had textbook signs of EDS and lifelong problems since I was a kid, but my case is more on the mild side so doctors have never stopped to think that my spectrum of mild to moderate problems were all related and caused by one thing. If it wasn't for RU-vid and me looking into things, I probably could have gone undiagnosed my whole life, but after finally bringing it up to my doctor, they said, you know, you might be onto something. And here we are. I'm hoping, like you, this will change my treatments, therapies, and surgeries to better fit my needs. I so happy you got this straightened out and that it's not vascular!
I'm so glad you were able to get the genetic testing and the answers. I got my hEDS diagnosis in September and it was incredibly validating knowing that there really was something going on. I'm trying now to get the testing because while I (and my mom) both have the traits of hEDS we also show signs of other types of EDS and I just want the knowledge that it's not one of the other types.
