At the age of 30 I had went into the hospital to have the veins stripped in both legs. I was told before surgery that they would make three incisions in my legs(at the ankle, at the knee and at the groin). When I woke up from surgery I had “37” 1 -2 inch incisions on my left leg, “39” on my right. I looked like I had gotten in a fight with jaws and lost. I was told my veins would not strip and they had to make incisions up and down my legs to pick out the vein that kept breaking. Within three years my right leg was swelled and 5-6 inches larger than my left leg. I went to doctors in Delaware, Philadelphia and Kentucky for 15 years before I found one that knew what the problem was and diagnosed me with lymphdema. I was told to wear heavy support hose for the swelling and elevate my legs when I could and to maintain my weight, which I did. My weight was between at 130 – 135 most of my adult life. When I turned 50 I went through menopause. By the time I was 55, I had gained 80 pounds all of it below the waist. My legs felt like they had heavy weights strapped on them, some days it took all of my energy to walk across the room, touching my legs caused pain and bruising. I was in extreme pain all of the time. I tried every diet I could find, joined the health club and started on an exercise routine, started walking every day, I even tried fasting, nothing allowed me to lose this weight. About the time I turned 60 I was finally diagnosed with lipedema (the ugly Fat disease). In most cases it is heredity (I have not been able to find anyone on either side of my family that was heavy and had the typical “pear shape” of lipedema.) Most people also get it at puberty, I got mine at menopause. Most people get lymphdema as a secondary condition, I had lymphdema a long time before getting lipedema. Lipedema is an increase in fat of the buttocks, hips and legs, affecting the arms in most, sparing the upper abdomen, trunk, feet and hands. It is not caused by over eating, life changes, diets and exercise do not eliminate it. Lipedema is not just about the physical changes and problems, for me it is also about the emotional. I am ashamed of how I look and my mobility problems. I do not go out many places because I don’t want to be seen. I feel like a freak that people see as someone who can’t control their eating and who lacks self control, neither of which is true. If diet and exercise would change this I would be thin. The lipedema fat itself is not smooth but contains small pea-sized nodules like foam balls in a bag. The excess fat growth on the buttocks, hips and legs gives a distorted pear shape to the body where the lower body is clearly out of proportion to the upper body. Normal fat cells are organized into groups called “fat lobules” that slide past one another under the skin along thin fibrils, so fat feels soft and smooth when the skin is pressed down. Researchers have found that the fat of lipedema patients is different. It results from the accumulation of fat cells that have become very large in size (hypertrophied) and stimulate production and recruitment of a molecule called “hyaluronic acid.” The increase in hyaluronic acid and water gives the lipedema fat a stiff quality, and the legs begin to feel heavy. The fat lobules that normally slide past each other round-up together instead. Hyaluronic acid and other molecules attract inflammatory white blood cells to the fat that produce damaging substances that injure the fat lobules, blood and lymphatic vessels, and other structures. As a result, the blood vessels break easily causing bruising. The lymphatic vessels, which initially pump more frequently in lipedema, start to fail and can swell. This process can eventually lead to the lymphatic vessels leaking, which allows more water to collect around the fat cells – causing the lipedema tissue to become heavy. The body tries to repair, filling in inflamed areas with a scar around the outside of the rounded fat lobules allowing them to be felt as small beads through the skin. From the research I have done the extreme pain of lipedema most likely results from nerves being damaged in the tissue as well as pressure on the nerves from excess trapped water. Lipedema fat develops in stages, though many women stay within stage 1 or 2 and do not progress to stage 3. I have stage 3. Stage 1 In Stage 1, the skin looks normal, but the amount of lipedema fat is increased. Stage 2 In stage 2, there are indentations of the skin and underlying fat similar to a mattress. The fat contains larger mounds of fat that can be lipomas or in some cases, lipomas filled with blood vessels called angiolipomas. Stage 3 In stage 3, bulky extrusions of skin and fat cause large deformations especially on the thighs and around the knees. This tissue growth causes pressure and damage and often leads to immobility and disability. Lipadema changes everything about your life. Emotionally, physically, mobility, and one that I have never seen listed other places professionally. I am a Sr Level IT specialist. I have been recruited and sought after my entire professional life. Then I got lipadema. The company I worked for went thru a down sizing and I found myself out a job for the first time in my life. People can tell you that your resume and work history is what you are hired on. I can tell you that your size and how you look is what shuts the doors. I went on several interviews that I was told there was no longer a job when I got there. Several gave me a no without asking me a question. I have a job now that is entry level making 50 percent less than I made before. It is life, and needs to be addressed as part of this disorder. I am the same person I was before I developed this disorder/disease. I still have the skills, experience, work ethic, I had before, however now people treat me as if I am lazy and stupid. Why is that. I also have people I do not know, that have never seen me before make cruel nasty comments to me. Here are a few examplesL "If I would get off of your fat ass and walk instead of rding a cart you might lose some weight." "If I looked like you I would be at the gym instead of the grocery store." "If I looked like you I would stay home." Even some family members and friends don't understand why I have gotten so fat. My mother before she died told me "If I looked like you I would never eat again." Some has suggested different diets and exercise programs. Explaining just gets a come back suggesting I am making excuses for "letting myself go". Each day presents a different challenge. Walking and mobility are a problem. I have had one knee replaced but damage that has been done to the tissue and nerves