This is a site that has been set up to present information in the form of personal stories of individuals who have lymphedema. If you are a survivor, this is your forum. If you are a caregiver or relative of a lymphedema survivor, this is your forum. If you are just interested in getting more information and learning about a little known, much neglected disease, you have found the right spot. This is the place to relate information about drug interactions and reactions, tell your horror stories, your success stories, your funny stories or just vent your frustrations.
First, a little education:
Lymphedema is the accumulation of lymphatic fluid in the interstitial (situated within or between the tissues of an organ or part) tissue that causes swelling, most often in the arm(s) and/or leg(s), as well as in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired from birth (primary), or when lymph vessels are damaged through injury or during surgery, or when lymph nodes are removed (secondary). When the impairment becomes so great that the lymphatic fluid is more than the lymphatic system can handle, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to grow in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in lymphangitis (infection) or cellulitis (another term for infection).
Often, when an individual first notices the unusual swelling, he or she contacts a doctor. The lucky one will find a doctor who is familiar with lymphedema and can get proper treatment from day one. However, as you will learn from the stories that follow, the average response from a doctor unfamiliar with the condition can range from "tennis elbow" to "lose weight," neither of which is accurate nor in any way conducive to proper treatment for this disease.
Now for the personal stories directly from the survivors themselves:
Ruth's Story ADDED 5/31/00
Lillian's story ADDED 6/2/00
Helen's story ADDED 8/28/01
Click here to add your story. Please put "Survivors" in the subject line of the email. Also, please include a statement giving us permission to put it on the "web." Needless to say, your full name will not be used nor will your email address or any other personal information be given out. If we put a "Contact ---" at the end of your story, the email comes to Chismtrail.com and we will forward it to you.
Visit often. We will be adding stories and information as they become available.
There are many sites which have more extensive information and links that you might want to check out. Some are listed below.
The Lymphoedema Association of Australia