Tuesday, January 13, 2009

Wow, I Suck at Blog Maintenance

It's almost been a year.
The last time I wrote, I only had 3 joints that needed surgery; my left shoulder, my left hip, and my left knee ( in case you are wondering, EDS effects the non-dominant side of the body more than the dominant side [don't tell anybody, my rheumatologist said it's a secret]). Now, I have those three joints, plus my right knee which require surgery.

I have also found out that my husband has Marfan syndrome.

My geneticist laughed at me.

He told me there is a chance that we may have:
Normal children (25%)
EDS effected children (25%)
Marfan effected children (25%)
EDS and Marfan effected children (25%)

And that's if I make it the necessary amount of time into my pregnancy that a baby can survive outside of the womb.

So, if I conceived and the baby was effected by both EDS and Marfan syndrome, I could potentially carry a child that would dislocate its limbs in-eutero, or come out disfigured. Since EDS and Marfan are both genetic connective tissue disorders, and they effect different genes, there is a chance that the child could "double up" on connective tissue disorders.

It's pretty scary.

If anybody out there has ever heard of a case where a person was diagnosed with both Marfan syndrome, and Ehlers-Danlos Syndrome, could you please let me know where I could find information about it?


elise said...

Hi BG,
Just writing to let you know someone is out here reading your blog. :) I just started blogging myself and my biggest test is to see if I can keep it up. Not so easy when you have EDS, eh? I have the hypermobility type.
I've been collecting blogs from people with EDS and some other interesting ones on pain management, chronic pain and relationships, and other helpful or fun stuff.
I am suspicious that my husband and family have a connective tissue disorder, possibly EDS, as well. Both of my step-kids show signs of EDS. He and I have decided not to have kids for other reasons but learning of EDS (after we got married) has made the choice a little more solid. I don't think my body could handle pregnancy with the change in hormones and the weight gain. Getting my monthly is tough enough - everything seems to want to fall apart worse then.
If you haven't already found them, check out the Ehlers-Danlos National Foundation. They are the best resource out there. A small fee for membership gets you all sorts of perks, including access to the message boards where I learned soooo much! THe search function is awesome! The web site is in transition right now so be patient with some broken links here and there.
Since EDS and Marfan's are so closely connected, researchers are finding a lot of overlap between them that they did not think was there until recently. EDSers should have their hearts checked, for example. Vascular complications can also be an issue. Finally, it is not uncommon for people with EDS to have a "marfanoid" body type. I know Stanford University has a Marfan clinic at their hospital - maybe there is info online?
Be well and keep up with your posts! ;)

Anonymous said...

Hello BG,

I also have EDS, the hypermobility type, and am curious what you posted about what your rheumatologist said. Is it true that EDS affects your non-dominant side more? Where can I find out more information on this?

BubbleGirl said...

From personal experience, I can say that for me it is absolutely true. My non-dominant side is significantly more affected than my dominant side. In the frequency of dislocations, I'd say I dislocate joints about 10 times as often on the non-dominant side.

As for information about this, as far as I know there isn't anything published. If you ask around the Facebook EDS groups, though, you will find that most people have a bad side of their body, and it is usually the non-dominant side.