Anyone else have Ehlers-Danlos syndrome?

Question

I'm only 18 and was recently diagnosed with Ehlers-Danlos syndrome. It's a big name that pretty much just means I'm double jointed and in a lot of pain. My joints don't work well, and I am constantly popping joints out of sockets. I was just curious to see if there is anyone else that has this, or maybe something like this, and how do you cope? 
​
​The news hit me hard because the specialist advised me I not have children as the risk of death for both baby and me is very high. I'm just worried for the future and not knowing how to cope with this. My fiancé is very supportive and is so sweet about the whole thing, but I'm worried I won't be able to fulfill his dreams and goals because I'll be holding him back.

Answer

I have hypermobile type with some vascular involvement and am pregnant with my 5th. All normal pregnancies and deliveries so far! God bless you!

Answer

Wow I'm really shocked you've been advised not to have children, especially because of risk of death?! That's only true if you have the vascular type. I have the Hypermobility type and have a 4 year and TTC again. I'm on a few groups on Facebook which there is a lot of EDS mothers if you want to join? Which type have u been diagnosed with? X

Answer

My mom and I have been preliminarily diagnosed with EDS via physical examination and medical history. We may have the vascular or the kyphoscoliotic EDS. A laundry list of severe issues. We need help to find a Dr. that can help us. We are in Bermuda and the Doctors are clueless about genetics here. We need to fly out ASAP. Please help if you can. Thank you.

Answer

I have EDS type 3 and Multiple Sclerosis.

Answer

I have Ehlers Danlos Syndrome Type 3 (Hypermobility). I'm 18 as well (as of this month). I also have POTS. Nice to meet you.

Answer

Have you thought about getting a second or maybe even third opinion? I have POTS and I know a lot of people that have my syndrome have Ehlers-Danlos. I know some have had successful pregnancies with healthy children. It wouldn't hurt to get another opinion. Good luck to you!

Answer

I'm very sorry to hear that you're going through this. The community is here for you.

Answer

Sorry to hear the news. I would get a second opinion to be safe. Just for your own, and to ease your mind. Best of luck and hugs!

Anyone else have Ehlers-Danlos syndrome?

The Top Baby Tracker App: Embrace New Beginnings with Tender Care

The Top Fertility Tracker App: Your Path to Achieving Pregnancy

The Top Pregnancy App: Nurturing Your Journey to Motherhood

The Top Period Tracker for Empowering Your Menstrual Health Journey