A blood clot diagnosis can be scary and confusing. As many as 900,000 Americans have blood clots each year, according to the Centers for Disease Control and Prevention (CDC). Moreover, one-third of those who have had a blood clot will have another episode within 10 years. Recovery from deep vein thrombosis (DVT) or pulmonary embolism (PE) can take several months and require strict adherence to your healthcare provider’s medication and treatment plans.
“A support system is crucial to help those who experience a blood clot through a difficult and often overwhelming recovery. Patients usually have to make significant lifestyle changes and must closely monitor their health, which can be exhausting and hard to adjust to,” says Janice Johnston, MD, Chief Medical Officer and Co-Founder of Redirect Health in Glendale, Arizona. “It’s essential to have a support team of medical professionals you trust who are highly knowledgeable in your situation as a blood clot recovery patient.”
The good news is that several organizations and social media groups offer support for blood clot patients in need. So if you or a loved one is feeling lost after a venous thromboembolism (VTE) diagnosis, here are some resources to help you navigate life after a blood clot.
1. American Blood Clot Association
The American Blood Clot Association is a nationwide nonprofit, voluntary health organization that educates patients and healthcare professionals in preventing, diagnosing, and treating life-threatening blood clots, including DVT, PE, and clot-related strokes.
“Our goal is to make as many Americans as possible aware of the dangers of blood clots. We work hard to emphasize the signs and symptoms of a blood clot so that people know to get themselves into a doctor or hospital immediately,” states Craig Cooper, a representative of the American Blood Clot Association. “We also want health professionals and paramedics to be more cognizant of the possibility that a patient has a blood clot … because with a blood clot, time is precious.”
If you visit the support group page on the American Blood Clot Association website, you’ll find links to several community support groups, including Adventist Health Care, The University of Vermont Medical Center, and Venous Resource Center. In addition, the association has a Facebook support group called the Blood Clot Support Group. The group’s purpose is to provide a platform for people affected by blood clots to discuss signs, symptoms, experiences, tips, and any subject related to VTE.
2. National American Thrombosis Forum
The National American Thrombosis Forum (NATF) is a nonprofit organization that teaches blood clot survivors and healthcare providers about thrombosis. This condition occurs when a blood clot blocks your blood vessel. By providing comprehensive online resources and support programs, the NATF can help improve the lives of those affected by blood clots.
NATF’s support group page allows you to register for different support groups, including a Newly Diagnosed Blood Clot Support Group, whose primary focus is to support those within 12 months of their VTE diagnosis.
These support groups help you find accurate information regarding blood clots, share your own blood clot experience with others, and help you deal with the physical and psychological challenges of this serious medical condition.
Visit NATF’s support resources page for more information on receiving blood clot support, including in-person patient events, and the latest research from medical experts.
3. Blood Clot Recovery Network
The Blood Clot Recovery Network (BCRN) understands how lonely and difficult it can be to recover from a blood clot. This organization offers support and information through an online community to help quell your blood clot–related anxiety. The BCRN community is a place for blood clot patients (and families and friends) to join together online, share information, offer mutual support, and assist one another in their recovery from the life-altering effects of VTE.
For more information, you can reach out to the BCRN by visiting its contact page. Plus, check out this helpful and informative blog post, written by BCRN’s founder, Sara Wyen (a blood clot survivor), which details the importance of support networks following a VTE diagnosis and includes links to other online support communities.
BCRN has a Facebook support group with nearly 7,000 members. The page states its purpose is “to provide support and information about recovery from DVT and PE blood clots” while recognizing that there’s “hope for healing, and you are not alone.”
4. National Blood Clot Alliance
The National Blood Clot Alliance (NBCA) offers an online, peer-to-peer support community that provides a safe environment for people affected by blood clots to share information and interact with others in a similar position.
“Social networks like the National Blood Clot Alliance can help patients get access to resources that provide educational benefit as well as patient advocacy,” says Yazan Abou-Ismail, MD, a hematologist and an assistant professor at the University of Utah in Salt Lake City. “They also help patients get in touch with support groups and others who suffer from a similar condition or require similar treatment.”
The association’s online support community can be accessed 24/7 and allows people to seek support for various conditions related to VTE, including anxiety, depression, and trauma. There’s also an NBCA Stop the Clot private Facebook group with over 3,000 members that offers a safe and supportive online space for blood clot patients to share their experiences and find support.
5. Pulmonary Embolism Facebook Group
This Facebook support group helps you find support from other people diagnosed with PE. This type of VTE occurs when a blood clot obstructs an artery in your lungs, according to the National Institutes of Health (NIH). The group has over 5,800 members who actively engage in mutual support for dealing with the complex recovery phase of VTE.
“The power of social media and social networks is that they bring together people from all over the world to communicate, find consolation, and encourage each other for all sorts of situations, especially for people in recovery from a PE or DVT diagnosis,” explains Dr. Johnston. “Social networks like the Stop the Clot Facebook Group and the Blood Clot Recovery Network Facebook Group are online communities made up of blood clot survivors who share stories, recovery tips, ask questions, and find support for all the physical and emotional healing one goes through during blood clot recovery.”
By: Adam Meyer and medically reviewed by Michael Cutler, DO, PhD
From: Everyday Health