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

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 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.

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 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!

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 ❤️

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! ❤

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 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 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.

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.

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.

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.

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.

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 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 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.

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

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!!!