Patient Stories

Patient Stories

My Lymphedema & Lipedema Story

By Sandra Dupree

Three GenerationsThree Generations of Dupree WomenI have always been active – dancing, hiking, and exploring with my family.  When I hit puberty, my legs became heavy.  Pregnancy was another challenging time for me. I gained weight and my legs seemed to change shape.  I no longer had defined kneecaps and my legs appeared lumpier. When I had early-onset menopause. I added 40-50 pounds in a few months, and my legs felt like cement blocks. Hiking became very difficult. My legs were painful, and I was easily fatigued.

I became a certified lymphedema therapist and immediately began to connect my younger daughter’s symptoms with the diagnosis.  She was seSandy2Pictured with Daughteren by the vascular anomaly clinic at CHOA and was given a diagnosis of lymphedema. I still didn’t attribute my leg heaviness and swelling to lymphedema until I received a diagnosis of stasis dermatitis, which led to a diagnosis of lymphedema for me, as well.  I had all the symptoms, but often wrote them off as something else.  I also received a diagnosis of lipedema, which helped me make sense of so many of my experiences, such as easily bruising, tenderness to touch, and difficulty losing weight— despite efforts to eat healthy and exercise. 

Misdiagnosed as Obesity My Entire Life
By: Francine Schwartz Schuler


I have Francine1had a weight problem my entire life, starting as a baby my mother was told to only give me Skim Milk. As a toddler I had chunky legs and started to become knock-kneed. My mother had me on diets from Weight Watchers, Scarsdale, OA, Hypnosis, and others, where I would lose some weight but never from my legs, especially once I started menstruation. As a young adult I did the Medifast program and got down to 175 pounds, I was thinner on top and 2 sizes bigger on the bottom, even with going to the gym daily doing cardio and aqua aerobics. I had to stop because my liver enzymes elevated rapidly. I steadily regained weight though I was dieting and exercising.

 

In my 30’s I rose to my highest recorded weight of 425 before finally haviFrancine2ng WLS in 2016. I lost 120 pounds, then started gaining weight primarily in my hips, thighs, buttocks, and abdomen. I was also rapidly losing my mobility and was in intractable pain. I had been diagnosed with Sjogren’s Syndrome, which was causing my arthritis to advance, chronic fatigue, and an immense amount of pain. In 2018 I had trouble walking and doing other activities of daily living and was in pain constantly despite being treated by Pain Management. My Quality of Life was flying out the window. In 2019 I could hardly walk, needing a rollator walker, mart carts and wheelchairs, needing help bathing and toileting, and was hardly able to do any household chores. Little did I know I had started Perimenopause and my hip blew up on my right side, my calves and arms got bigger, my extremities were heavy, and I was in continuous pain and miserable.

Joan AJC Article pic

INSPIRE ATLANTA

By Nancy Badertscher. For the AJC

July 19, 2022

 

Joan White has devoted nearly 30 years to helping others understand and deal with lymphedema, a painful condition that almost always persists for life.

White’s youngest son was still in high school when she was rushed to the hospital for what doctors later determined was a ruptured appendix and gangrene in the colon.

She rebounded from the surgery that kept her alive but not from the lymphedema it created.

Lymphedema is a chronic medical condition that develops from a blockage in the lymphatic system, preventing lymph fluids from draining well and resulting in painful swelling – often in the arms after breast cancer surgery.

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The Lighthouse Lymphedema Network is a 501 (C) (3) organization of individuals who are lymphedema patients, or who have an interest in lymphedema.

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