has anyone heard of ehlers-danlos syndrome

Nursey_MaryJane · 11-22-2008, 01:28 PM

i was just recently diagnosed with ehlers-danlos syndrome, which is a genetic disorder. i was wondering if anyone had heard of this, or has any experience with this and pregnancy. any input would be wounderful, as my DH and i are now at a crossroads in our IF journey.

Charity · 11-23-2008, 03:10 PM

MaryJane...I'm sorry for your diagnosis, but glad you've been diagnosed and can be prepared. I do not have this, nor did I know about it, but looked it up based on your post. Can I ask which type you have..? There are several variants, and the type you have will determine the effect pregnancy will have on you. Also, there are varying degrees within each variant. It appears your biggest concern is the impact pregnancy could have on your personal health versus the genetic aspect of passing on this trait. Though that is also a serious concern. It would appear that the variant and your severity versus simply the diagnosis are the questions to be asking yourselves with regard to your future journey. I wish you all the luck in the world, and hope this is just the key to solving your IF issues. Baby Dust Kiddo!

Hypermobility (type 3) - Extreme cases can be life threatening due to mitral valve prolapse, which would make pregnancy stressful on your heart.
Classical (types 1 and 2) - Same as Hypermobility but with dermitological aspect. Pregnancy can be life-threatening in this variant due to same reason as above.
Vascular (type 4) - Due to possibility of uterine rupture, pregnancy can be life-threatening in people with this variant.
Kyphoscoliosis/Arthrochalasis/Dermatosparaxis (types 6, 7A & 7B, and 7C) - All extremely rare and only about 100 cases in total have been reported.

Nursey_MaryJane · 11-23-2008, 05:30 PM

hi charity,

thank you for your input and kind words. i have been diagnosed as classical type 2. it is an autosomal dominat gene, and because of that i would have a 50% of passing the type that i have or another variation onto my child. i have a feeling that this means the end of my ttc jouney, and is probably the reason for my IF. my guess is that my body is trying to prevent me from trying to get pregnant. if you find anything else on ehlers-danlos and pregnancy, that would be wonderful. i have no idea if the RE has heard of this, or even if going to see the RE is worth it at this point.

kitkat30 · 12-11-2008, 04:55 PM

I'm not sure this is helpful and i don't have all the details....but i was watching mystery diagnosis and there was a women on there with this and she had 3 children...had horrible pregnancies but did carry to term, so i would definetly ask around.

biokatie · 12-18-2008, 11:33 PM

My DH has EDS Classical. He has known about it since he was a small boy. We have decided to go ahead with our ttc efforts. I imagine it is quite a different story as a female with the disorder having to consider both maternal and fetal complications. Let me know if you have any ?'s as I have done extensive EDS research.

aVEDSer · 01-06-2009, 02:24 PM

I have Vascular, Ehlers-Danlos Syndrome and have been through 7 pregnancies total because we kept trying for that girl we always dreamed of. She is my fourth child and I was diagnosed when she was two, almost a year ago now. Because it is a dominant genetic disorder with VEDS, each of my children also have a 50% chance of having the same often painful, crippling and deadly disorder I do.

You can contact Lynn Sanders and she can answer your questions about pregnancy. Her contact info is on her website. It is still under construction but there is wonderful info there and she is open to those who wish to volunteer. Right now they are trying to raise money for research for people like me, those who die too young because of EDS and unfortunately not all are solely vascular types that develop the vascular issues. Please learn everything you can, medical professionals often are not familiar with this disorder as it is rare.

The web-site is Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc., there is also the CEDA web-site (Canadian), EDS Today, EDNF, and many others as well.

There are lots of genetic web-sites that will help you understand the disorder but I would encourage you to join an on-line support group like in the yahoo health groups as the diagnosis doesn't provide all the answers you will need.

11-22-2008, 01:28 PM	#1 (permalink)
Nursey_MaryJane 0-99 post 2 of hearts Join Date: Oct 2008 Location: Florida Posts: 38	has anyone heard of ehlers-danlos syndrome i was just recently diagnosed with ehlers-danlos syndrome, which is a genetic disorder. i was wondering if anyone had heard of this, or has any experience with this and pregnancy. any input would be wounderful, as my DH and i are now at a crossroads in our IF journey.

11-23-2008, 03:10 PM	#2 (permalink)
Charity 1000-4999 post queen of hearts Join Date: Jun 2007 Location: South-Central Wisconsin Posts: 1,840	MaryJane...I'm sorry for your diagnosis, but glad you've been diagnosed and can be prepared. I do not have this, nor did I know about it, but looked it up based on your post. Can I ask which type you have..? There are several variants, and the type you have will determine the effect pregnancy will have on you. Also, there are varying degrees within each variant. It appears your biggest concern is the impact pregnancy could have on your personal health versus the genetic aspect of passing on this trait. Though that is also a serious concern. It would appear that the variant and your severity versus simply the diagnosis are the questions to be asking yourselves with regard to your future journey. I wish you all the luck in the world, and hope this is just the key to solving your IF issues. Baby Dust Kiddo! Hypermobility (type 3) - Extreme cases can be life threatening due to mitral valve prolapse, which would make pregnancy stressful on your heart. Classical (types 1 and 2) - Same as Hypermobility but with dermitological aspect. Pregnancy can be life-threatening in this variant due to same reason as above. Vascular (type 4) - Due to possibility of uterine rupture, pregnancy can be life-threatening in people with this variant. Kyphoscoliosis/Arthrochalasis/Dermatosparaxis (types 6, 7A & 7B, and 7C) - All extremely rare and only about 100 cases in total have been reported. __________________ Me 37 DH 35 1st IVF/ICSI Oct-06 - No Fert 1st IUI w/Inj Jun-07 - BFPX2/MC 2nd IUI w/Inj Mar-08 - BFN 3rd IUI w/Inj May-08 – Chem 4th IUI w/Inj Jul-08 - BFN Dx Homo C677T MTHFR Aug-08 5th IUI w/Inj Mar-09 - BFN 6th IUI w/Inj Apr-09 - BFN/Chem? 7th IUI w/Inj Jul-09 - BFN Trying To Swing Finances For IVF in 2010 Hoping For A Natural Miracle In The Meantime

01-06-2009, 02:24 PM	#6 (permalink)
aVEDSer Registered User Join Date: Jan 2009 Location: USA Posts: 1	a vascular type with Ehlers-Danlos Syndrome I have Vascular, Ehlers-Danlos Syndrome and have been through 7 pregnancies total because we kept trying for that girl we always dreamed of. She is my fourth child and I was diagnosed when she was two, almost a year ago now. Because it is a dominant genetic disorder with VEDS, each of my children also have a 50% chance of having the same often painful, crippling and deadly disorder I do. You can contact Lynn Sanders and she can answer your questions about pregnancy. Her contact info is on her website. It is still under construction but there is wonderful info there and she is open to those who wish to volunteer. Right now they are trying to raise money for research for people like me, those who die too young because of EDS and unfortunately not all are solely vascular types that develop the vascular issues. Please learn everything you can, medical professionals often are not familiar with this disorder as it is rare. The web-site is Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc., there is also the CEDA web-site (Canadian), EDS Today, EDNF, and many others as well. There are lots of genetic web-sites that will help you understand the disorder but I would encourage you to join an on-line support group like in the yahoo health groups as the diagnosis doesn't provide all the answers you will need.

VISIT OUR SISTER SITES:
JustMommies Pregnancy Calendar	eHarmony Advice Dating Advice	Project Wedding Wedding Songs	Weddingbee Wedding Blog

Currently Active Chat Room Users: 0 \| Scheduled Chat Room Events
	Users in Chat Rooms: No one's chatting right now!

11-23-2008, 05:30 PM	#3 (permalink)
Nursey_MaryJane 0-99 post 2 of hearts Join Date: Oct 2008 Location: Florida Posts: 38	hi charity, thank you for your input and kind words. i have been diagnosed as classical type 2. it is an autosomal dominat gene, and because of that i would have a 50% of passing the type that i have or another variation onto my child. i have a feeling that this means the end of my ttc jouney, and is probably the reason for my IF. my guess is that my body is trying to prevent me from trying to get pregnant. if you find anything else on ehlers-danlos and pregnancy, that would be wonderful. i have no idea if the RE has heard of this, or even if going to see the RE is worth it at this point.

12-11-2008, 04:55 PM	#4 (permalink)
kitkat30 0-99 post 2 of hearts Join Date: Nov 2008 Location: Eastern Ohio Posts: 73	I'm not sure this is helpful and i don't have all the details....but i was watching mystery diagnosis and there was a women on there with this and she had 3 children...had horrible pregnancies but did carry to term, so i would definetly ask around.

12-18-2008, 11:33 PM	#5 (permalink)
biokatie Registered User Join Date: Dec 2008 Posts: 1	My DH has EDS Classical. He has known about it since he was a small boy. We have decided to go ahead with our ttc efforts. I imagine it is quite a different story as a female with the disorder having to consider both maternal and fetal complications. Let me know if you have any ?'s as I have done extensive EDS research.