Women are uniquely affected by Myotonic Dystrophy. The congenital form of the disease is almost exclusively passed on by the mother. With the birth of a congenital infant the mother will need to care for the infant while she herself is affected with a slowly progressive disease. This disease manifests itself very insidiously. In a nutshell it sneaks up and takes away a lot of the parenting skills over time.
Additionally infants that are not congenital in nature may have the juvenile onset. This can cause issues with learning disability, social, emotional and other considerations. This will cause a lot of stress on the family and the mom who may be the primary caretaker.
Some issues that women need to consider
1. The need to consider reproduction via Pre-Implant diagnosis
2. The need to care for an infant with Juvenile or Congenital DM1
3. Increased Menstrual Pain or Bleeding
This is an older article from 1998 describing the issues with 25 women with DM1 mainly discussing reproduction issues. This was before pre-implant diagnosis became available in the Western world. Now eggs can be fertilized outside the body, tested for DM and only the healthy eggs implanted into the woman.
Here is some information from a study that was just done in 2011. It states that women with DM who are pregnant need a lot of prenatal care
Outcome in pregnancies complicated by myotonic dystrophy: a study of 31 patients and review of the literature.
Institute for Human Genetics, University of Technology, RWTH Aachen, Germany. firstname.lastname@example.org
Myotonic dystrophy can be associated with increased obstetric risks, but the maternal contribution for gestational outcome is difficult to establish considering the varying degrees of severity and the influence of fetal factors.
We analyzed the pregnancy course and outcome of 31 women with classic myotonic dystrophy, who delivered a total of 66 children. In addition, 93 gestations from the literature were reviewed.
As most patients were not aware of their diagnosis at reproductive age, often the first indication of the maternal disease was a severely affected child (39%). Miscarriages and pre-eclampsia did not increase. Ectopic pregnancies occurred in 4%, placenta previa in 9% of gestations, while postpartum hemorrhage due to uterine atonia was only reported twice. Severe urinary tract infections were reported for 19% of the patients, but were only rarely encountered in the literature. Preterm labor, before 34 weeks, occurred in 19% of gestations and was often, but not exclusively attributed to congenitally affected fetuses in contrast to polyhydramnios (17%). Labor abnormalities of all three stages were frequent, increasing the number of operative deliveries (cesarean section rate 36%). Perinatal mortality was 15% and mainly related to congenitally affected children.
The risk for obstetric complications and urinary tract infections increases for pregnant patients with myotonic dystrophy. They need constant obstetric monitoring. It is hoped that a better awareness of the clinical picture might help to improve gestational outcome in myotonic dystrophy.