Anyone Pregnant And Have Ehler Danlos Syndrome?

I've never heard of ehler danlos, sorry. But the earliest time for a baby to be born is in the 23rd week. Even then it has less then 10% chance of survival.

Hi stephanie,
although i'm not pregnant now, but i'm thinking about getting pregnant. Just like you, I have eds.. I know i'm either type I (classical) or type ii mitis (less serious form).
I did a lot of research about pregnancy and eds online and found this site (which is quite comforting actually) I think this should calm your fear a bit... If you are not type iv the vascular type..You have nothing to worry about.
My husband and I are gonna start trying in august! Let us know how you're doing!
Ps. I completely understand how you feel, cuz I feel the same thing, even before i'm pregnant!

Http://www.Ncbi.Nlm.Nih.Gov/entrez /query.Fcgi?Cmd=retrieve&db=pubmed& ;list_uids=11952457&dopt=abstract

god bless, janelle

Pregnancy and the ehlers-danlos syndrome: a retrospective study in a dutch population.

Lind j, wallenburg hc.

Department of obstetrics and gynecology, medisch centrum haaglanden, westeinde hospital, den haag, the netherlands. Jan@lind.D emon.Nl

background: the study was carried out to assess the course and outcome of pregnancies in women with the ehlers-danlos syndrome, with the aim of developing guidelines for assessment of risk and counseling, and for providing optimum medical and obstetric care. Methods: a retrospective study based on data collected from members of the dutch association of ehlers-danlos patients. Pregnancies and neonatal outcomes of the affected mothers were compared with those of the nonaffected mothers who delivered an infant with ehlers-danlos syndrome. Results: in a group of 46 women with ehlers-danlos syndrome, 128 pregnancies beyond 24 weeks gestation were evaluated and compared with 43 pregnancies of 33 nonaffected women. The main maternal complications consisted of pelvic pain and instability (26% vs. 7%). One bowel rupture was reported in a woman with ehlers-danlos syndrome type iv. Preterm delivery occurred in 21% of the affected mothers compared with 40% of the nonaffected women with an affected infant; the women with ehlers-danlos syndrome experienced postpartum hemorrhage (19% vs. 7%) and complicated perineal wounds (8% vs. 0%) more often than the unaffected women. The floppy infant syndrome was diagnosed in 13% of the affected infants and did not occur in the nonaffected neonates. Conclusion: pregnancy is generally well-tolerated in women with ehlers-danlos syndrome, with favorable maternal and neonatal outcomes. In ehlers-danlos syndrome type iv it may be associated with severe maternal complications. Preconceptional counseling concerning specific possible complications and a multidisciplinary approach are recommended.

Pmid: 11952457 [pubmed - indexed for medline]

Hi there,
i too have eds as well as my daughter and sister. I miscarried two times but did finally carry a daughter full term. I was on bed rest and it was an exhausting time in my life but it is possible to have a child with this condition. I believe I have hypermobile type eds but will be going to the national institute of health in march for further testing which will be used as part of a connective tissue research project.
I belong to several eds support groups. I had to stop working due to the pain and dislocations back in 2004. The pain consumes my life. If you want any information on eds please email me and I will be happy to help you. I have tons of information. Even my doctors have asked for research articles for other patients that have problems not similiar to mine.
Good luck with the pregnancy and good luck with your health. Just know that there is support out there for those of us that do not seem to be able to get help from doctors that do not know about this condition.

I just saw a few programs about eds. It's seems like a painful life to live, and i'm sorry that you have to go through it.

I hope your pregnancy goes full term and you have a healthy little baby!!

Sarah

Old post

Stephanie,
I have EDS (only diagnosed last year) and have 2 adult children. Both have EDS. My first baby was born at 40 weeks, second at 35 weeks (induced due to placental insufficiency). Had placental insufficiency in 1st pregnancy, too. Felt very ill all thru both pregnancies and hip joints kept trying to dislocate. Now I understand why.

Hope all goes well. Any questions, please ask.

i was looking it up and i found this, which was quite disturbing:


Classical types 1 and 2
Affects approximately 2 to 5 in 100,000 people. In addition to the joint and cardiac effects noted above for hypermobility, this variant is characterized by soft, highly elastic, velvety skin which may tear, bruise, or scar easily and/or be slow to heal, and which has a tendency to develop benign fatty growths as well as benign fibrous growths on pressure areas. Pregnancy can be life-threatening in this variant. It affects type-V collagen, as well as type I.


it says pregnancy can be life threatening... thats horrible... i feel very bad for this poster... i wonder hwo everything went!

I am so confused... I have heard that EDS is no problem when pregnant and also that 60% of pregnancys will end in miscarriage or still birth... what is the truth?
I have had 3 miscarriages at 16 weeks and one live birth at 37 weeks... My son has recently been diagnosed with EDS and this explains alot about my whole family.
I want to try and have another baby but now I'm scared that it will be a losing battle.
Does anyone have any advise for me?