Seeking Advice on Dealing with Ehlers Danlos Syndrome Diagnosis

❤️❤️❤️❤️ Yes! Always, always, always stand up for yourself! Advocate for yourself, nobody else is coming to save you, nobody else is coming to help you! Ehlers-Danlos Syndrome can look like, to some doctors, one is simply hysterical and or a hypo❤️chondriac. However, on the flip side of that when you come in and say look, I have this diagnosis, to any specialist you may see after with a PCP, we will make things much more clear and🙏🙌🙌 understandable to them! 😉❤️🤗💕

So glad you finally got the diagnosis. I suggest searching on YouTube to get good info about it. There are some quality channels on it. Also, I've heard there's good Facebook groups for it too, though I haven't looked yet myself. There you could get good suggestions about all sorts of things and find more people to relate to. All the best to you.

I'm glad you got the diagnosis you needed! I'm so sorry that you had to be passed around from doctor to doctors, it sucks! I would research into it, watch YouTube videos, see what works for you in terms of medical aids, medicine, all those things, and last connect with people on social media. That is one of the biggest things I've learned on my journey. Surround yourself with people who have the same stuff, it makes it a little easier having people who can say maybe try this, this helped me, this didn't help me. It has made my journey a little easier to navigate

I totally understand! It can be super overwhelming! Keep up the good work! It may be hard but you've got people who want to help! I can give you my socials via pm on here if you'd like

Some days it is hard to even get out of bed! Some days it is hard to get up and do something! Some days you have a really good day and the next not so much! Just keep your head up