Brenda's Cause

• Brenda's Story
• DVT Facts
• The DVT Support Group of the Lower Mainland (BC)
• Collaborations and Affiliations

Brenda's primary charitable cause is that of raising awareness for VTE (Venous Thromboembolism) which includes two conditions: Deep Vein Thrombosis (DVT) and its potentially fatal complication, Pulmonary Embolism (PE), both of which she was diagnosed with in June 2008.

"When I first woke up with a pain in back of my right leg, I assumed it was a pulled or strained muscle and didn't think too much about it. As the days progressed, it became more painful, achy, and tender; it became more difficult to walk normally. The pain initially felt like it was coming from my calf, then behind my knee, but as time passed it seemed to travel down my leg and, in my ignorance, I thought the pain was working itself down and out my leg, so might be improving.

All of this lasted for almost two weeks before I finally went to see my doctor late one Friday afternoon. I can't believe I waited that long. As I discovered later, I was lucky that I finally sought medical attention before boarding a plane for cross-country flight scheduled for the following Monday morning. I ended up in emergency instead. Not only did I have DVT (a blood clot from just above my right knee to my ankle), but I later learned at the hospital that I had a Pulmonary Embolism (a portion of the clot that traveled from my leg, through my heart, into my right lung) as well. I have been told, many times over by medical professionals, that I am very lucky to be alive."

Update: After ceasing Warfarin anti-coagulation therapy, as it had been over a year, I was then tested for 14 various blood tests, one of which I tested positive for. In September 2009, it was discovered that I have Thrombophilia, specifically Factor V Leiden, a hereditary/genetic condition which increases the tendency of my blood to clot. This means I must take heightened precautions (i.e. Fragmin injections) after any surgeries, extended air travel, etc. as my risk factor for another venous thromboembolism is significantly increased due this condition. (For more information on Thrombophilia or Factor V Leiden, visit http://www.fvleiden.org/)

Did you know that DVT is a serious condition that kills more people in America than breast cancer and AIDS—combined?

"Deep Vein Thrombosis (DVT) is a blood clot that usually occurs in the leg, most often on one side, although it can happen in other parts of the body. DVT afflicts over 380,000 people per year in the United States. If the blood clot dislodges, it can travel to the lungs and cause a blockage known as a pulmonary embolism (PE) or lung clot. Lung clots affect over 530,000 people a year and 300,000, or almost 1 out of 3, are fatal." —National Alliance for Thrombosis & Thrombophilia (NATT), USA

"One person dies every five to six minutes from a DVT or PE related event in America... Many of the causes of DVT are entirely preventable and easily treatable, so it's crucial that people understand their level of risk and take action to reduce this. Improved awareness and access to treatment can save a great number of lives." —Dr. Graham

To listen to Brenda's August 2008 podcast, Signs and Symptoms of DVT and PE, listen here.

For detailed facts, information, risk factors, and tips for prevention for DVT and PE, see: www.meetup.com/DVT-Support-Group-of-the-LowerMainland/pages/DVT_Facts/

For a detailed list of resources links, including general information, additional patient information, news, and how to form support groups, see: www.meetup.com/DVT-Support-Group-of-the-Lower-Mainland/pages/RESOURCES_TO_RECOMMEND/

To date, there is not a recognized DVT patient advocate or public awareness organization in Canada, (although many people are working together towards that goal). Therefore, starting at a local grass roots level, Brenda founded the DVT Support Group of the Lower Mainland, a live peer support group held in the Lower Mainland/Vancouver area.

• are Deep Vein Thrombosis (DVT) survivors, including Pulmonary Embolism (PE) in some cases
• have or had DVT/PE and are looking for support, understanding, and resources
• have a blood disorder, (such as Factor V Leiden), that may increase the risk of developing a DVT
• are currently taking anti-coagulants
• have family members or friends with DVT/PE
• want to learn more about DVT and PE
• would like to raise public awareness and education regarding the risk factors and symptoms of DVT and PE to help others minimize their risks and be able to identify a DVT before it becomes life threatening

As a patient advocate, Brenda offers to speak on behalf of the survivors who can't, or tragically did not survive. Her mission is to raise awareness to the public, patients, and healthcare providers, while partnering with like-minded individuals and organizations around the globe, in order to educate and ultimately to save lives. To have Brenda speak at your organization or event, please email her directly.

To find out the next meeting date, location, agenda, details, and to RSVP, please visit this link.

Burnaby Hospital Outpatient Anticoagulation Program

Brenda was personally treated at the Burnaby Hospital Outpatient Anticoagulation Program by Coordinator, Leilani Todorovic. Being grateful for the program, wanting to ensure it's longevity, and to support other patients, Brenda teams with Leilani, and now the program refers patients to the DVT Support Group.

The Thrombosis Clinic of Vancouver General Hospital

Brenda was introduced to Dr. Agnes Lee, the Director of Thrombosis at Vancouver General Hospital (Div. of Hematology, UBC, Diamond Health Care Centre) through the NATF, where Dr. Lee is a member. Dr. Lee is also a member/supporter of the DVT Support Group and together, Brenda and Agnes are collaborating on public education initiatives.

For recent news regarding Agnes' work, see page 4 of 8 for an article entitled: "New director of thrombosis to prevent, treat dangerous blood clots"—VGH & UBC Hospital Foundation.

The NATF Advocacy Committee

Brenda is a member of the NATF (North American Thrombosis Forum) Advocacy Committee. The NATF is based out of Boston, MA, serving all of North America, including: Canada, the USA, and Mexico.

"The North American Thrombosis Forum (NATF) is a 501(c)3 nonprofit organization that was founded on May 11, 2006 with the goal of focusing on the unmet needs and issues related to thrombosis and cardiovascular diseases such as deep vein thrombosis, pulmonary embolism, myocardial infarction, peripheral arterial occlusive disease, and stroke. NATF's five areas of major focus are: 1) basic translational research, 2) clinical research, especially diagnosis and therapy, 3) prevention and education, 4) public policy, and 5) advocacy.

NATF strives to improve patient care, outcomes, and public health by supporting thrombosis-related programs, such as novel research projects, innovative educational programs, public policy initiatives, regulatory issues and advocacy through collaborative multidisciplinary prevention efforts."

In the committee's words, NATF "simply put: Not Accepting Thrombosis Fatalites. Thrombosis is a blood clot (DVT) that forms (most often) in the leg and ultimately kills thousands every year... more than the deaths caused by breast cancer, AIDS, and automobile accidents... combined. Our mission is to educate health care professionals and the public in order to care for those who have a DVT, had a DVT, or are worried about getting a DVT. Our driving force is to help those caregivers for DVTs to have the best of research, processes, and procedures to improve patient outcomes. We are headed by the world's best physicians, pharmacists, and researchers who are responsible for changing the way we manage this killer. We have a very active patient advisory committee and we would value your input and participation. You can find out all about us on www.NATFonline.org." You can also find us on Facebook, where you can sign up as a fan.

PeerNetBC

Brenda is a member of the PeerNetBCand the DVT Support Group is under the umbrella of their Self-Help and Peer Support Groups in the Lower Mainland.