The American Factor V Leiden Association, Inc., a non-profit 501(c)(3) charitable organization, was founded in 2020 by Dr. Teresa and Michael Ousley after their daughter Alissa, a perfectly healthy 22 year old, was diagnosed in 2018 with cerebral venous sinus thrombosis (CVST), a condition where blood clots form in the veins of the brain. After testing, it was discovered that Alissa carries the Factor V Leiden gene mutation. The physician overseeing Alissa’s care indicated Factor V Leiden played a major role in the development of the blood clots and it may have been triggered by other medical or genetic issues.
Today Alissa suffers from constant headaches, vision problems, depression, and other physical and mental ailments as a result of the cerebral venous blood clots. She takes blood thinners daily with the hope that no more clots will develop. Her healthcare providers tell her that nothing more can be done to lessen the impact from the clots and that she will need to take the medication for the rest of her life.
Shortly afterwards in 2019, Alissa’s blood relative and uncle Greg age 49, who also unknowingly carried the Factor V Leiden genetic disorder, began experiencing severe headaches and seizures due to the development of severe cerebral venous blood clots in his brain. He passed away within a few days.
The medical doctors for his case stated that Factor V Leiden played a major role but could not identify what other medical issues in conjunction with Factor V Leiden triggered the blood clots to form and contributed to his death.
They could not explain why the clots formed so quickly or why they developed in the brain versus the much more common deep vein thrombosis or DVT in the legs. They also could not explain the link between Greg and his niece Alissa and why they both developed cerebral venous blood clots.
Since then many other family members have been tested and have discovered that they too carry Factor V Leiden. Thankfully, no one has had any medical conditions develop to date and only Alissa and Greg have been affected by the disorder.
In summary, we have several blood related family members all diagnosed with Factor V Leiden and all with totally different outcomes. We have been unable to find anyone in the medical community who can give an explanation.
Thus, the American Factor V Leiden Association was launched because…
* very little information is disseminated to the general public about the disorder although it is by far the most common inherited risk factor for abnormal blood clotting in the United States.
* millions of people carry the genetic disorder and do not know they have it until after they develop a blood clot.
* the majority of the general public and some in the medical community are unaware or misinformed about the disorder’s potentially deadly effects.
* a number of people live every day with various physical and mental issues, many of which are debilitating, due to venous blood clots brought on by Factor V Leiden.
* the people who are diagnosed with or physically affected by Factor V Leiden do not have an organization to advocate for them nor do they have a common public social outlet to share their experiences or voice their concerns.
* no where on the internet is there a comprehensive resource in one place that contains a compilation of what is known about the disorder.
* while a fair amount of research has been performed since Factor V Leiden was first identified in 1994, there are still many unanswered questions concerning the genetic disorder.
* some of the information that is available about Factor V Leiden is often speculated and at times misleading.
* treatment for Factor V Leiden is sometimes unclear and challenging and many healthcare professionals feel more research needs to be done.
* very few people are ever tested for the disorder until after they have a blood clot and therefore are at risk for serious or fatal outcomes.
*testing for Factor V Leiden is controversial and often discouraged because some feel that as the majority of the people who carry the gene mutation never develop a blood clot, it is better for the patient to not know they have it and avoid any mental stress that knowing may cause.
Finally, and most importantly, the association was founded out of concern for you and your family.
It is our hope that by using the resources and information gathered here and by working with your medical professional, you are able to make intelligent and informed decisions about your health or the health of someone you love should you find out you or they carry the Factor V Leiden gene mutation.
If our association and its resources can help save the life of one person, then it has successfully carried out its mission.
Together through knowledge and awareness we can reduce the risk and help to improve and save lives.
Fast Facts - Join the Fight
Most people have never heard of Factor V Leiden.
A lot of people carry the genetic mutation and a few people develop blood clots that are related to Factor V Leiden.
Do you know someone who has suffered a deep vein thrombosis, pulmonary embolism, or other type of venous blood clot? In many cases, those blood clots were caused by issues relating to Factor V Leiden.
A large number of people live every day with complications caused by blood clots.
Sadly, the Centers for Disease Control (CDC) estimates that 274 people die each day or over 100,000 each year as a result of blood clots.
If the person had known they carried the Factor V Leiden gene mutation, in many cases some very simple steps taken beforehand may have saved their life.