There are a lot of ways to get help for deep vein thrombosis (DVT). Nonprofit organizations, online communities, and blogs can provide extra information about the condition and related health issues. They can connect you with other people dealing with the same thing through online and in-person support groups.
Websites and social media groups can be good sources for research, emotional support, and tips for daily living, but don’t turn to them for medical advice. Ask your doctor for the best information about your condition. Always check in with your doctor if you’re thinking of changing your treatment.
When getting information online, ask yourself:
- Who runs this site? Are they selling anything?
- Is this information based on scientific research?
- Is this site up to date?
- Do these claims seem too good to be true?
Here are some sources to check out:
Nonprofit Organizations
These trustworthy groups offer all kinds of information about preventing and recovering from DVT and blood clots. Many share patients’ stories.
- National Blood Clot Alliance
- American Blood Clot Association
- North American Thrombosis Forum
- Healthy Veins (American Vein and Lymphatic Society)
- CDC’s information on blood clots
https://www.cdc.gov/ncbddd/dvt/index.html
- Clot Connect (from the University of North Carolina Blood Research Center)
https://clotconnect.wpcomstaging.com/
You can also look into these professional organizations’ websites with information aimed at doctors who treat and research blood clots:
- American Society of Hematology
- Anticoagulation Forum
https://acforum.org/web/index.php
- International Society on Thrombosis and Haemostasis
Blogs
You can find people with DVT and blood clots writing about their experiences online. Remember that these blogs are personal accounts and not a source of medical advice.
- Blood Clot Recovery Network
Online Communities
Most of the nonprofit organizations listed above have social media accounts you can follow on whichever platform you like best. Find the links on the organization’s website to be sure you’re following the official accounts.
Facebook. There are many groups for people who’ve had DVT, a pulmonary embolism, or blood clots. Most are private and meant only for people with those conditions, so you’ll need to send a request to join.
https://www.facebook.com/groups/6059716578
https://www.facebook.com/groups/457715421074375
Reddit. This online community has a page for people who want to discuss their experience with blood clots. You can read the conversation without joining. They sometimes host question-and-answer sessions with experts.
https://www.reddit.com/r/ClotSurvivors/
Hashtags. Search the hashtags #stoptheclot, #bloodclotsurvivor, and #deepveinthrombosis on Facebook, Instagram, or Twitter to find posts by organizations and individuals.
It’s easy for misinformation to spread on social media, so be careful that you’re getting the facts. Some tips:
- Check for the original source of information.
- Visit the account’s website for more context and details.
- Look for a symbol that says the account is verified.
- See if the content is up to date, medically reviewed, and based on science.
- Look to see if the account is selling something or sharing information that seems too good to be true. If so, be skeptical.