The Truth About My EDS - I WAS MISDIAGNOSED!!!

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.

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 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!

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.

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 ❤️

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.

I smiled so hard when you said genetic proof - i felt that in my SOUL!!

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! ❤

I've been in that same boat and its so much of a relief to KNOW that there is a reason for why your body is so bad and sick. I love you!

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!

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.

so happy to hear this ! 😭❤️ i hope everything goes good from here on out for you.

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.

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.

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.

This makes me so happy seeing how euphoric you are about this diagnosis! Yayy!

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!

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. 💙💙💙💙🙌🙌🙌🙌😃

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.