Thrombosis has done a terrible number on my family. My father died at age 54 of intestinal blot clots after many years of significant heart disease. My brother died of a pulmonary embolism at age 55 after repeated PEs beginning in his 20s. My niece suffered a cerebral venous sinus thrombosis at age 26 and was in neurological intensive care and then months in inpatient rehabilitation. She is now on warfarin and has had no incidents since then. In April 2021, my 36-year-old nephew died of a heart attack apparently caused by PE. He had DVTs beginning in his 20s and was periodically on an anticoagulant.
I have been the luckiest member of my family with respect to this scourge. I had my first DVT at age 48 and another at age 54. I have been on warfarin for the last 17 years without problems.
I spoke at my nephew’s memorial service, and I promised the following: To get tested for all the known genetic risk factors for thrombosis and share the results with my family members, and to support each of them in addressing their different situations with respect to thrombosis. I also promised to get involved with the best advocacy group(s) working on prevention, treatment, and management of blood clot-related conditions to ensure that fewer people have to suffer what my family has had to suffer.
Comprehensive testing is particularly important. Different family members have been tested over the years on some of the common genetic risk factors (protein C deficiency, factor V Leiden, etc.) No dominant risk factor or clear pattern has emerged and many of us have sketchy memories of which tests were done and what the results were. I am now working with a well-respected hematologist to achieve the most complete and accurate picture.
I am now looking at the excellent work done by the National Blood Clot Alliance (NBCA) to see if I can contribute. Thank you to the NBCA leadership and to your many volunteers for your passion and your commitment to this critically important cause.
MORE INFORMATION AND RESOURCES:
- Join our online peer support community to connect with other people who have experienced a blood clot.
- Learn more about blood clot risk factors, signs and symptoms, and prevention.
- Read more stories, or share your story with NBCA.