|
This site is dedicated to a 32 year-old-woman named Tonya who recently died of complications related to lipedema. She did not know and her doctors did not know
she had this disease. If they knew, they would not have sent her home from the ER 3 times, and she most likely would not have died.
The website is entitled Our Stories Our Expereinces.
Since my daughter and I learned three years ago that we have lipedema, we have researched, asked each other questions about our bodies and lipedema as the questions arose, and compiled a list of symptoms that only we would know because we talk to people who contact us from this website. We are not medical researchers, nor do we pretent to be. We simply believe that when doctors tell us there is no "cure," what they are saying is, "We don't have one." And how could they? Only a handful of researchers are working with fat as symptomatic of an underlying health issue. We may not have answers, but we CAN help the medical community along by giving them all of the collective information we can.
SO PLEASE GO TO OVOE (Our Voices Our Experiences) often. Share your body's wisdom with us. Maybe we will make a book together; our voices and experience united could bring about social awareness and a cure for lipedema.
Today I learned from her blog that toxins are stored in fat and that we lipedema women need to improve the health of our fat. What an interesting thought! Maybe we can't get rid of it, but we can make it healthier. And, I learned that a society called Fat Disordes Research Society dedicated to our cause has an online journal out that is a must carry-on for every lipedema woman who goes to a new doctor and tries to explain that she has a disease he or she hasn't heard of.
Because we are thought to be great liars about our "food" addictions, arming ourselves with literature sometimes help good doctors to listen.
|
News & Events
