My story

I earned a BA from the University of North Carolina in Chapel Hill ‘91 and a MA from North Carolina State University ‘94 in Political Science.   I worked for the NC Medicaid program after graduate school and later for Blue Cross Blue Shield NC in physician and hospital contracting.  Along the way, I met my husband, had a child, and then….my life took a hard turn personally and professionally when I had a blood clot—deep vein thrombosis DVT and pulmonary embolism PE.

My blood clots were not immediately diagnosed. My leg pain was initially attributed to a pulled muscle. My chest pain and shortness of breath was diagnosed as respiratory infection for which I was prescribed antibiotics.

Only after a second near fatal pulmonary embolism episode were he correct diagnostic tests performed and an accurate DVT and PE diagnosis obtained. I had a 9-day hospitalization, much in ICU.  My family was told I might not survive.  It was discovered I had a thrombophilia—a blood clotting disorder.  This out-of-the-blue clotting experience became my initial motivation to become an advocate.

After recovery and hungry for educational information, I drove 3 hours to a seminar held by the National Blood Clot Alliance (at that time called the National Alliance for Thrombosis and Thrombophilia) where for the first time I met other patients with my condition.  I began volunteering with them and at various points throughout the years, I have worked with them in chapter formation, education and communications.

In 2010, I began working at the University of North Carolina Chapel Hill School of Medicine where I co-founded a thrombosis education program called Clot Connect. I’m VERY proud of this quality endeavor.  Sadly, it is currently unfunded and unstaffed.

Over the years as an advocate and educator, I’ve met family who’ve lost loved ones to blood clots or its treatment.  I had no idea I would become one of those myself.  My Dad had cancer and developed DVT and PE.  While on anticoagulation, he developed an internal bleed and died.  Thrombosis treatment, while life-saving, comes with known risks–namely a risk of bleeding. Anticoagulants are the #1 class of drugs for adverse medical events.

My personal goal has been to speak up for patients who have no voice. I’ve represented the patient perspective as a:

  • Member of the Clinical Practice Guideline Panel on Thrombophilia with the American Association of Hematology ASH (2015-2018), advising in the development of evidence based clinical practice guidelines on VTE.  
  • Member of the Centers for Disease Control and Prevention Division of Blood Disorders (CDC DBD) Expert Panel on Prevention Research
  • Advisor on Patient and Family Engagement to the Centers for Medicare and Medicaid (CMS) Partnership for Patients initiative targeting hospital-acquired conditions
  • Member of National Quality Forum (NQF) Affinity Groups on venous thromboembolism and adverse drug events.

I believe it takes an informed patients and an informed health care professional working together for the most optimal health outcomes.