Your Resource for all Things Relating to Factor V Leiden

Share Your Story

Thank you so much for considering sharing your story.


Given it prevalence in our country and the world, Factor V Leiden has affected the lives of so many people. We feel one of the best outlets for dealing with the fear, worry, pain and grief that blood clots related to Factor V Leiden can bring is to share your experience with others.


Your story may be highlighted on our website under the “Living With Factor V Leiden – In Their Own Words” section. It could be such an encouragement to so many people and remind them that they are not alone.

If you are interested in sharing your personal experience, please use the guidelines and form below to help draft your story. It should be about your personal experience with Factor V Leiden and/or blood clots. Please share how you or those close to you have been affected.


  1. Please keep your story around 500 words. You are certainly welcome to share your story in fewer words… no story is too short.
  2. Please include the risk factors, if any, that may have contributed to your blood clotting experience (e.g., estrogen-based birth control, long haul travel, surgery, hospitalization).
  3. How has your experience with Factor V Leiden or blood clots changed you or your lifestyle, if at all?
  4. What have you learned since the disorder came into your life? Have any AFVLA resources or services been valuable to you as you have learned more about or dealt with the impact of your experience?
  5. If you have Factor V Leiden, have your family members been tested? If so, what was learned from the test results?
  6. If you were to give advice to others, what would it be?
  7. Please do not share personal medical information that could impact your employment or other aspects of your personal life.

To get started, please complete the form below. We suggest that you share a photo to accompany your story to make your story more personal.

Once submitted, we will notify you to confirm we received your story.

Share Your Story

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