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Lori Preston, founding member of NBCA, learned of her inherited clotting disorder during pregnancy:
“I remember the conversation as if it were yesterday. My mother shared with me the painful recollection of the loss of her stillborn son she delivered 14 months before she gave birth to me. We never talked about this sad experience again, not until 1999.
In June of 1999, I was eight weeks pregnant and went to my obstetrician for my first pregnancy check-up. Before seeing the doctor, I filled out a family history form noting that my younger brother, my mother, and my maternal grandmother all had blood clots. I discussed this medical finding with my doctor, and she ordered DNA testing to see if I had a genetic predisposition to clotting.
Two weeks passed, and I assumed that everything from my check-up was fine. I was wrong. My doctor called and said my DNA lab results showed that I am homozygous for a blood clotting condition called Factor V Leiden. I learned that being homozygous, which means I inherited a defective gene from both my mom and dad, puts me at an increased risk of having a blood clot. Having this disorder along with being pregnant put me at “high risk.” Without medication, I had the possibility of developing clots that could result in a miscarriage. I immediately met with a hematologist and perinatalogist to discuss my disorder.
My medical management included daily injections of low-molecular-weight-heparin during my pregnancy and post delivery. Initially I was scared. I was concerned the heparin would harm the baby and me. There seemed to be a general lack of information regarding this disorder, and I felt isolated. My fear was further exacerbated when my mother developed pulmonary embolisms, blood clots in the lungs, during my pregnancy. Fortunately, she recovered and is now managed with Coumadin therapy.
In order to become more knowledgeable about Factor V Leiden, I read my Dr.’s notes, lab tests, and articles on the Internet. I had faith in my doctors and my pregnancy went well. In January 2000, we were blessed with the birth of our first daughter. I am truly grateful for my knowledge of Factor V Leiden, and it has given me the opportunity to educate my extended family regarding its affects. My mother, father, brother, daughters, and additional family members have Factor V Leiden.
Since discovering my disorder, I am enjoying life, and I try to make smart choices every day to decrease my risk of clotting. For example, I stay hydrated, I exercise, I am not on birth control, and I don’t smoke. We were also blessed with birth of our second daughter, who was born in January 2007. Thanks to my experiences, I feel empowered to educate people, particularly women, regarding thrombosis and thrombophilia. If nothing else, I want my daughters to understand and accept the disorder, not to fear it.”