A Message from Dr. Teresa Ousley, Executive Director
The need for awareness is great and with awareness comes knowledge... knowledge is power.
Ask your neighbor or someone on the street if they have ever heard of Factor V Leiden and you are most likely going to hear a response along the lines of “Wasn’t he a great pianist or music composer from the 17th century?” Sadly, if you had asked me or most everyone in my family that same question a few years ago, the responses would have been very similar. The need for awareness of this genetic disorder is great.
In recent years, venous thrombosis has become one of the leading causes of cardiovascular death in the country and the leading cause for preventable hospital deaths. Factor V Leiden plays a role in a fair amount of these deaths. In 2018, a consumer experience study of people who were diagnosed with Factor V Leiden reflected an overwhelming hunger to learn more about the disorder and a desire to take action to reduce their risk of venous blood clots. These recent events have made it increasingly clear that a dedicated organization is needed to expand awareness and educate families about the genetic disorder Factor V Leiden. Due to this void, the American Factor V Leiden Association was formed in 2020 to help fill that need.
Amazing strides have been made in the medical world in recent years with the development of new anticoagulants in our fight against thromboembolism… but we have a distance to go. The best medical treatment to prevent venous blood clots is still unclear in many cases. Until we are able to help the body fully know when to form the “good” clots and avoid the “bad” clots, our greatest tool and weapon against lives lost to thrombosis is awareness, knowledge, and counseling. Fully armed, people can then take steps to avoid those things that can trigger a blood clot and reduce their risks. Knowledge is power.
The American Factor V Leiden Association strives to embrace an interprofessional collaboration with medical professionals and genetic counselors to provide the most up-to-date research information on a wide variety of topics about Factor V Leiden allowing you, together with your health care professional, the ability to make the most informed decisions regarding your health and the health of your loved ones. Knowledge can help save lives.
If you have a passion for Factor V Leiden and would like to help us educate others, please consider partnering with us as we work to promote awareness, expand knowledge and help save lives.