With endless possibilities for a bright future, 23-year-old Alexandra Rowan, a University of Pittsburgh graduate with a double major in writing and communications, had what many young women just starting a new life dream about: A blossoming new career in a bustling and hip city, a loving family, a devoted boyfriend, a growing circle of friends, and an independent spirit that compelled her to travel and explore the wonders of the world all around her.
Sadly, however, Alexandra’s life ended suddenly in 2013, when she collapsed due to a massive pulmonary embolism, or blood clot, that had formed in her lung. Without warning or any signal that something was wrong, the life of this beautiful young woman had ended.
Alexandra’s only known risk factor for blood clots at that time was estrogen-based birth control. In the years that followed, however, and with the aid of genetic testing, Alexandra’s family learned that the most common form of thrombophilia – factor V Leiden – may have been a compounding factor in further elevating her clotting risk.
In 2015, Alexandra’s mother Roz Rowan was diagnosed with a deep vein thrombosis or blood clot in her leg. Three years later, she then experienced a pulmonary embolism or blood clot in her lung. More recently, in 2022, Roz suffered a major clot-provoked stroke. During this tumultuous time, genetic testing showed that Roz is affected by factor V Leiden, an inherited clotting disorder that increases a person’s risk for life-threatening clotting. While it was not confirmed that Alexandra was affected by factor V Leiden, it is possible or very likely that she had inherited this gene mutation too.
The risk for blood clots linked to estrogen-based birth control are well documented, and this risk is known to be dramatically compounded by genetic clotting disorders. In fact, if a woman has a genetic clotting disorder like factor V Leiden and uses combined hormonal contraception her clotting risk is 35 times greater than women who take hormonal birth control but are not affected by inherited thrombophilia.
Women who have a personal or family history of clotting have good options to choose from for effective and safe birth control. Today, many also have the option to undergo genetic testing to help inform their decision-making and ensure their well-being.
The Rowan Foundation was formed in 2013 to honor the memory of its namesake Alexandra Rowan. Today, the Foundation is focused on women’s health and blood clotting. The Foundation provides information and resources to help women understand their lifelong clotting risks, with emphasis on ensuring that women are fully informed about their contraception options. The overarching aim of the Rowan Foundation is to help reduce the number of lives lost due to preventable blood clots.
Read more about Alexandra and the work of the Rowan Foundation: Honoring the Legacy of Alexandra.
Read more about genetic testing and contraception here.