Your Resource for all Things Relating to Factor V Leiden

Volume 1/ Issue 3 / July 2021

In This Issue…

 
    • “Factor V Leiden and Pregnancy” – how does FVL increase my chances of developing a blood clot if I am pregnant and should I be tested before becoming pregnant. – Factor V Leiden Headlines 

 

    • “Dealing with Anxiety that Can Come With a Factor V Leiden Diagnosis” – we speak with a mental health counselor about healthy ways to live life to the fullest after being diagnosed with FVL. – a message from Executive Director Dr. Teresa Ousley.

 

    • Factor V Leiden Follow-Up – The AFVLA is very excited and honored to welcome three new board members who specialize in areas related to Factor V Leiden.

Welcome to the July Issue!

 

Emailed each month, this newsletter will cover the latest topics of interest making the news, keep you informed about current research studies, and offer noteworthy and relevant stories from our staff, medical professionals, and others interested in or affected by Factor V Leiden. In it you will find informative articles explaining what your association is doing to promote awareness and to educate others about Factor V Leiden. You will keep up-to-date on the latest initiatives being carried out by the association and explain how we are advocating for you to help keep you and your family safe.

 

Our goal is to make it interesting, informative and usable as a tool to pass along and convey to others important and relevant information about this very common genetic blood clotting disorder.

Thank you so much for your interest and support… we are so grateful and very much depend on caring people like you to help spread the word about Factor V Leiden.

Factor V Leiden Headlines

Factor V Leiden and Pregnancy

The increased risk for blood clots caused by pregnancy combined with the increased risk for blood clots caused by Factor V Leiden should be taken very seriously.

 

It is fairly well known that the chemical changes in the body caused by pregnancy create an increased risk for the development of dangerous blood clots. Women who have just given birth are also at an increased risk for blood clots. Pregnancy does not directly cause blood clots, but it does pose a four-fold increased risk for the development of a blood clot. That risk actually increases to about 20-fold in the weeks immediately following childbirth, and is at its highest — a risk of 100-fold — in the first week after the baby is born.

 

These blood clots usually occur in the veins and are known as a venous thrombosis (VTE). The most common type of VTE is called a deep vein thrombosis or DVT that usually develops in the deep veins of the legs. A portion of the DVT can break loose and travel to the lungs. This is known as a pulmonary embolism or PE and can become life-threatening. These are the most common types although abnormal blood clots can form anywhere including the brain.

 

This tendency for a woman’s body to form clots during pregnancy is thought to be the result of a natural biological response intended to protect women against the possibility of major bleeding challenges of miscarriage and childbirth.

 

An inherited blood clotting disorder or thrombophilia like Factor V Leiden (FVL) further increase the risk for blood clots during pregnancy.

Some studies have shown that women who have heterozygous Factor V Leiden (carry only one mutated factor V gene) have an 8 to 52-fold increase depending on coexisting risk factors such as obesity or advanced age. Homozygous carriers (they carry two mutated factor V genes) have much higher risks with some studies claiming as high as 100-fold.

 

Studies also show that women with multiple blood clotting disorders such as Factor V Leiden combined with the prothrombin 20210G>A mutation or other thrombophilia have the highest risk for pregnancy-associated VTE.

 

Other Medical Issues Thought to Be Related to FVL

 

Studies are still being done to determine the exact role that Factor V Leiden plays during pregnancy and the weeks following the birth. Some studies have suggested that Factor V Leiden is associated with miscarriage, stillbirth, unexplained fetal loss, preeclampsia, placental abruption, intrauterine fetal growth restriction, and blood clots in the placenta and umbilical cord. Other studies have suggested that the association with Factor V Leiden and these issues is lacking. More research is needed.

 

Therefore, women should discuss their potential risk factors with their healthcare professional or genetic counselor and make sure they take steps to address any risks they might identify. This should include a discussion about family history and any genetic blood clotting disorders that are known.

 

Treatment options have expanded with the development of several new anticoagulants (blood thinners) in recent years that can safely be taken during pregnancy and after the birth.

 

The National Blood Clot Alliance (NBCA), working with the Alexandra L. Rowan Memorial Foundation, has put together some excellent information on pregnancy, anticoagulants, and the prevention of blood clots. To visit their website, click here.

 

https://womenandbloodclots.org/pregnancy-and-post-childbirth/

 

Should I Be Tested for FVL if I am Pregnant?

The current testing guidelines relating to Factor V Leiden recommend that women who have suffered a venous thrombosis during pregnancy or while taking oral contraceptives containing estrogen be tested. Some guidelines include women who have suffered recurrent pregnancy loss, unexplained severe preeclampsia, placental abruption or intrauterine fetal growth restriction.

 

Until more is known, almost everyone agrees that when dealing with the increased risk of blood clots associated with pregnancy, knowing you have the Factor V Leiden genetic mutation puts you at an advantage over not knowing. Having that extra knowledge helps your healthcare professional make more informed decisions and gives you more of an awareness about the signs and symptoms of dangerous blood clots BEFORE a serious blood clot develops.

 

Keep in mind that Factor V Leiden is the most common genetic cause of primary and recurrent venous thromboembolism in women. Also, according to the National Institutes of Health, venous thromboembolism is the leading cause of maternal death in the United States.

You don’t have to search very far to find very heartbreaking and tragic stories about women who have suffered serious pregnancy complications, only to find out later that an unknown genetic disorder called Factor V Leiden that they unknowingly carried played a role. The importance of the test soon becomes clear after reading their stories.

 

We feel it is a safe assumption that if a woman knew before or after becoming pregnant that she is at a higher risk of blood clotting because she has the genetic mutation, she would want to take all the necessary precautions before and during her pregnancy in order to have a healthy pregnancy.

 

If you are considering pregnancy or are already pregnant, we strongly recommend that you ask your healthcare professional or genetic counselor if testing for Factor V Leiden should be considered in your situation. Knowing you have Factor V Leiden could save your life.

 

The test to see if you have Factor V Leiden is not intrusive and one that your healthcare professional can perform with a simple blood test.

 

Ultimately, for those who do not fall within the current testing guidelines and testing is not recommended, deciding whether to be tested for Factor V Leiden is a personal decision.

 

What has been your experience with Factor V Leiden and pregnancy? Do you feel more research needs to be done? Should more testing for FVL be done prior to becoming pregnant? Please share with us your thoughts and experiences… with your permission we will share some of them in the August newsletter.

 

Please email me at Teresa.Ousley@FactorV.org .

Factor V Leiden >>Fast Fact<<

Factor V Leiden is an inherited genetic disorder meaning that you inherited it from one or possibly both of your parents and thus, you were born with it.

Dealing with Anxiety That Can Come With a Factor V Leiden Diagnosis…

 

– A Message from Dr. Teresa Ousley, Executive Director

 

As a nursing professor, I teach my students that the patients they care for are “more than their diagnosis.” They are husbands and wives, fathers and mothers, sons and daughters just to name a few. Many of the patients have full and active lives despite having less than a desirable medical diagnosis.

 

So how is it that a patient can live a life filled with joy and happiness after being given a lifelong diagnosis such as Factor V Leiden? Tammi Imel, M.A., a counselor who owned and operated a private therapy practice for 17 years and was an adjunct professor of psychology for over 20 years, offers some great advice for ordinary people who are coping with extraordinary health issues.

 

Imel offers five ways to work through the health diagnosis that can help lead to a full and happy life.

 

1) It is important to understand that Kubler-Ross’s stages of grief often applies to the diagnosis of a chronic illness. It is normal, just as in grieving, to cycle through various stages at different times and often more than once.

 

2) Try not to let your chronic illness define you. It does impact you, yet keeping your self-identity stable and positive is crucial to good mental health.

 

3) Processing your feelings related to your condition and the effects of the condition on your life with a therapist trained in coping with chronic illness can be very helpful. If a therapist with a specialty in coping with chronic illness is not available locally, consider seeing a therapist who has been trained in Cognitive Behavior Therapy. They can also be helpful.

 

4) Understand that stereotypes regarding persons with chronic illnesses are baseless and harmful. Try to avoid them as well as people who perpetuate these ideas and attitudes.

 

5) Use your voice to contribute to what will help you and help others with a chronic illness. Strive to support, educate, and show others what chronic illness really looks like – ordinary persons coping with extraordinary health issues while working towards living happy and healthy lives.

Imel also encourages patients to start a binder of information that is related to Factor V Leiden that includes helpful information, questions for their physicians, and information they would like to keep on hand to reference.

 

While the definition of health can look different for each individual, it is important to not let a chronic diagnosis define you. You are an important gift to many people who are there to support you while encouraging you to live your best life.

 

Have you experienced a high degree of anxiety since being diagnosed with FVL? What are some ways you have found to decrease this anxiety? I would love to hear from you. With your permission, I will share some of your responses in the August newsletter. Please contact me at Teresa.Ousley@FactorV.org. Your stories, thoughts, and insight may be just what some of our readers need and be a source of encouragement to many.

 

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.

Factor V Leiden >>Fast Fact<<

Another name used for Factor V Leiden is Activated Protein C Resistance.

One of the goals of the American Factor V Leiden Association is to assemble a very diverse Board of Directors who are well-versed and involved in specialties that relate to Factor V Leiden.

 

These specialties would include such areas as genetics and genomics, hematology, oncology, mental health, OB and gynecology, pharmacology, and neurology.

 

Over the last couple months, the association has been very blessed and very thankful to be able to welcome three new board members who are extremely knowledgeable in several of these fields:

 

Kari Kaplan has a Masters of Science degree in Genetics and Genetic Counseling. Kari serves as a Senior Genomic Science Specialist and Genomic Science Liaison for a large company in California.

 

Michaela Terry, BSN, RN is a registered nurse specializing in neurology.

 

Jennifer Howell, BSN, RN is also a registered nurse who serves in an oncology / hematology unit at a large medical facility in Colorado.

 

The AFVLA is in contact with others who have expressed an interest and we hope to be able to welcome them as new board members in the coming weeks.

 

If you have an interest in serving on the Board of Directors for the American Factor V Leiden Association, please contact me at Teresa.Ousley@FactorV.org. We would be honored to have your expertise and insight as we grow the association.

Factor V Leiden >>Fast Fact<<

Factor V Leiden was first identified at Leiden University in Leiden, a city in the Netherlands by Dr. Rogier M. Bertina and Dr. Pieter Reitsma, PhD in 1994.

Have you visited the American Factor V Leiden Association Facebook page?

Here is where you can find the latest news and information about Factor V Leiden posted by the AFVLA. You can see the status of upcoming events and stay up-to-date with what is happening at the association. You can also share your thoughts and ideas with us and others. Click below to check it out!

In the August, 2021 Issue...

Monthly Features

Factor V Leiden Headlines – “Common Anticoagulants Used to Treat Venous Thrombosis and Factor V Leiden” – how effective are these “blood thinners” at preventing blood clots and what are the side effects.

 

Factor V Leiden Office Memo – “Testing the Pediatric Population for FVL” – we examine the pros and cons of testing our little ones. – Some thoughts from our Executive Director Dr. Teresa Ousley.

 

Factor V Leiden Fast Facts – Fun facts that expand awareness and promote education about this barely known but very common genetic blood clotting disorder.

 

Factor V Leiden Follow-Up – We address your questions and comments from previous issues. Your voice is very important to us.

Our Mission...

The American Factor V Leiden Association is dedicated to its mission to serve as a central resource to the general public and medical community, expand awareness, promote education, advocate for and support those affected, assist in establishing testing guidelines, strongly encourage additional research, and facilitate in the exchange of information relating to Factor V Leiden. The ultimate goal is to save lives that would be lost to thrombosis related to Factor V Leiden.

Meet Dr. Teresa Ousley…

Dr. Teresa Ousley is a co-founder of the American Factor V Leiden Association and serves as the Executive Director. Her always positive, happy demeanor, dedication, and absolute concern and caring for others perfectly models the desired image, purpose and goals of the organization. Her Doctor of Nursing Practice degree with an emphasis in leadership was preceded by a Master of Science in nursing education. She has spent several years educating our future nurses of tomorrow and continues to serve as an Assistant Professor of Nursing. Her true passion and dedication for education and public awareness shines through the moment you meet her. The association is very blessed to have her at the helm forging its future and being laser focused on accomplishing its mission. Take a second and say “hi”, she has never met a stranger and would love to hear from you. Teresa.Ousley@FactorV.org

Please visit

www.FactorV.org

Get involved and make a difference!

Together through knowledge and awareness we can reduce the risk and help to improve and save lives.

The American Factor V Leiden Association, Inc is a non-profit 501(c)(3) charitable organization. Your gift regardless of the amount goes a long way to further the cause and help get the word out about this barely known but very common genetic blood clotting disorder.

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