Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
If so, is anyone up for messaging me? I have a few questions about it and the APS support group seems to be kind of dead.
http://www.apsfa.org/
They are a smaller group who focuses on APS. The National Blood Clot Alliance (www.stoptheclot.org) also represents the APS community (as with other blood clot disorders) on a larger National level.
R/
Tom
Good luck
Here is some information regarding AT-III, which is no longer addressed as Anti-Thrombin III but rather as Antithrombin Deficiency now:
http://www.stoptheclot.org/news/article138.htm
Unfortunately, other than Facebook, Dailystrength, and Yahoo groups there are no support groups for any of the thrombophilias. The North American Thrombosis Forum out of Boston is trying to launch both a national support group through local hospitals who are part of the NATF family and through a on-line support forum. I was invited to sit in on one of the inital meetings, more so to later gather my insight and recommendation on how the group should progress. But even this particular support group, though great for first time newly diagnosed VTE patients, will not necessarily touch on the various clotting disorders.
The University of North Carolina's blood clot out reach program known as Clot Connect (www.clotconnect.org) did have a on-line patient forum whch was often monitored by Dr. Stephan Moll of UNC. Due to funding restraints, we had decided to take the patient forum off the website due to lack of patient traffice visiting the forum, instead focusing on patient literature and education.
The national voice for all blood clot disorders and all DVT/PE/Atrial Fib patients is the National Blood Clot Alliance (www.stoptheclot.org). This is our patients community version of the American Heart Association. Unlike NATF which is a healthcare advocacy organization, NBCA is a patient advocacy organization led by patients who have experiences blood clots. They are also fully funded by the Centers for Disease Control and Prevention through a collaberative grant to help raise awareness.
R/
Tom