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General Information

The incidence of DVT and/or PE is 1-2 per 1,000 adults per year in the United States alone. The U.S. Surgeon General estimates that there are 100,000–180,000 fatal PE cases annually. 

Those individuals fortunate enough to survive DVT or PE may have lingering physical discomfort, anxiety, and uncertainty about the future.

You are not alone.

Patients diagnosed with a blood clot in the legs (deep vein thrombosis), or lung (pulmonary embolism) often have questions regarding their physical health.  Physical limitations can include: pain, swelling, and tenderness of the extremities (chronic venous insufficiency and post thrombotic syndrome) and symptoms of shortness of breath (pulmonary hypertension).

Psychologically, patients also suffer from fear related to their increased risk of recurrence (30% over ten years) if anticoagulation is discontinued. In fact, a recent registry study done in Denmark showed that individuals who suffered a DVT or PE had a poorer mental health prognosis when compared to their peers, and that 1 in 5 individuals diagnosed with a DVT or PE were prescribed a psychotropic drug within 5 years of diagnosis. 

The Survivors must also cope with the side effects of anticoagulation therapy, most commonly bleeding and with the addition of the novel oral anticoagulants patients now must make important decisions about which medication is the best for them. Finally, many confront financial hardship or social ostracization due to the venous thromboembolism.   

Illness-focused Support Groups have a beneficial impact on quality of life and improve the psychosocial functioning of patients. Support Groups allow patients to:

  • Find accurate information about blood clots
  • Learn about current research from an expert
  • Share with others first-hand experiences
  • Help one another cope with the physical and psychological challenges of a clot

Upcoming Boston Support Group Meetings

  • Tuesday, February 28
  • Tuesday, March 28
  • Tuesday, April 25
  • Tuesday, May 23

Support Group meetings begin at 7:00 PM, and are held at the Brigham and Women's Hospital in Boston on the 5th floor of the Shapiro building. Support groups are open-enrollment. To register, please email Kathryn Mikkelsen at kmikkelsen@natfonline.org.

Supp Group

 

History of NATF PE Support Groups

For 24 years Dr. Samuel Z. Goldhaber (NATF President) and Ruth Morrison, RN, BSN (member, NATF Patient Advocacy Committee) have held a monthly VTE Support Group at Brigham and Women’s Hospital. A typical meeting has between 10-15 patient attendees. Our attendees represent all stages of recovery: some have suffered a thromboembolic event decades ago and enjoy coming to the meeting to learn new information and lend support to other patients; others are newly diagnosed and still overwhelmed with their diagnosis and onslaught of new information. We have enjoyed a diverse mix of both men and women, young and elderly (ages range from 17 to well into the 80s). The feedback we receive from our attendees is that the support group has been invaluable to their recovery, both physically and mentally:

- “Having a doctor explain the new drugs on the market in a way I can easily understand them has helped me to have discussions with my doctor about the best treatment for me.”

- “Learning about the disease and that others have the same problems. That there is help and support close by.”

- “Knowing that life goes on pretty much as before for the vast majority of patients with only minimal daily inconveniences.”

- “I like hearing about the current status of research in this area.”

- “It was extremely beneficial for me to hear that others had similar fears that I had. Just being able to express these fears and feelings to others was a tremendous help to me.” 

 

Download this powerpoint presentation to learn more about NATF support groups.

 

 

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