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?
Joe, The Email, And What I Have to Say
1 day ago