Genetics and Baby

amsuther005

I have a genetic condition called Ehlers Danlos Syndrome, hyper mobility type. My OB doesn't know about the condition but is doing research. I was hoping for some first hand accounts, though. I know wha I wa able to get my hands on from the internet, but it left me with more questions than ever. Does anyone on here have this condition and has had a baby before?

kimmarie1105

I have never heard of this but I have so many questions. How do you know you have it yet you know nothing about it? Has it affected you at all during your life?

amsuther005

I was diagnosed when I was 16 after my dad had to go to the ER and got a doctor who could name his problem. Once he had his diagnosis, my sister and I were tested for it, too, and both diagnosed with it. I know plenty about it-- how it makes my body feel. The biggest symptoms are pain and dislocations/subluxations (or partial dislocations). It is effected by hormones, but I don't know how baby hormones effect it, if at all. Most doctors don't even know the condition exists, let alone how to treat it. And while I've met doctors who are not so close minded and will listen to me about it, I'm out of y depth here. I know your body starts producing hormones that make things stretch to make room for the baby.... That's why things dislocate with this condition. There's an imbalance in collagen levels that makes everything stretchier already. I've had multiple knee surgeries, countless dislocations, stomach problems, carpal tunnel, diagnosed with rhumetoid arthritis just recently, all as a result of this genetic condition. (My boyfriend is amazing. He goes through a lot to stay with me and he's so supportive, even though I know it is not easy when I'm having a bad day).

kimmarie1105

Wow! That's all very intense. I can offer you no wisdom. However I hope that your doctor is able to educate him/herself enough about it to help you. Pregnancy is hard enough on its own. Good luck and congrats!

amsuther005

Thank you both!! I have an appt with my OB Wednesday. It's my first ultrasound. I'll definitely bring up the physical therapy. And hopefully I will have a chance to sit down and explain the symptoms I have. Once the doc is convinced my issues are not a crock of shit, life gets a whole lot easier.