Patient Stories
Amiya Shah is a 12-year-old lymphedema patient who resides in Canada with her mom, Dr. Priya Sood. Amiya’s goal is to become a famous clothing designer. In the summer of 2024, Amiya attended the Camp Watch Me program in Colorado for children with lymphedema. There, she met Dr. Shelley DiCecco, CLT and a board member of the LLN.
After an uneventful pregnancy, Dr. Sood gave birth to Amiya, the second of three daughters. At birth, Amiya showed right labial swelling. In her first few weeks, Amiya was vomiting breast milk and had poor weight gain, followed by fever and a diagnosis of Citrobacter sepsis. After a few weeks, an endoscopy showed villi. She was diagnosed with Intestinal Lymphangiectasia and right-sided Hemi-Lymphedema. Amiya was also low in lymphocytes, immunoglobulins, and albumin.
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.
By Sharon S. Shepard
“Did a doctor tell you to do this or is it a personal preference?”
I glared at the snarky nurse over my mask. I had already explained my lymphedema to my doctor, the lab supervisor, and two administrators before entering her clinic. Now this woman implied I was crazy to want blood drawn from the top of my foot, when regular labs aren’t allowed to perform the procedure.
My condition is a mystery to most doctors and nurses because they can’t see it and it’s not well-covered in school – it’s called Stage One Lymphedema, in both arms. When I was diagnosed with bilateral early-stage breast cancer in 2017, the standard of care required removal of up to five sentinel lymph nodes on each side to check them for cancer. My surgeon was careful, and my nodes were all clear, but surgery on the tiny lymphatic vessels can leave scar tissue and blockage.
Fortunately, my hospital provided a lymphedema awareness seminar after surgery. A physical therapist explained the goal of avoiding infection and trauma to the at-risk arms and recommended compression sleeves to prevent lymphedema when flying. Lymphedema can show up years, even decades after damage to the lymphatic system – when an event over-stresses these vessels that drain white blood cells and heavy fluid from tissues.
Joan White
This month’s Community Champion is Joan White. We received multiple nominations for Joan, who in the 1980s, developed lymphedema after a life-threatening surgery, and when she found limited resources for those living with lymphedema in the US, she founded the Lighthouse Lymphedema Network (LLN) in 1993. The LLN is a non-profit organization with the mission of promoting awareness of lymphedema and educating and providing support for lymphedema patients, family and caregivers, the medical community, insurance companies and other lymphedema support groups. Today, over 30 years later and at the age of 82, Joan remains an active member of Board of Directors of the LLN, having invested thousands of hours on behalf of others.
Lymphedema: An Interview with Joan White, Lighthouse Lymphedema Network (Episode 80, To Your Health with Dr. Jim Morrow) on BusinessRadioX.com
Joan White with the Lighthouse Lymphedema Network was Dr. Morrow’s guest on this episode of To Your Health. She and Dr. Morrow discussed what lymphedema is, what causes it, and the evolution of treatment over the years. They also talked about how to find certified therapists, the need for research on children with lymphedema, the future of treatment, and more.
To Your Health is brought to you by Village Medical (formerly Morrow Family Medicine), which brings the care back to healthcare.
- Details
- Sandra DuPree
My Lymphedema & Lipedema Story
By Sandra Dupree
Three 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 se
Pictured 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 
had 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 havi
ng 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.
Click on the Play button to view Sigvaris’ Faces of Lymphedema video. This video was produced by Sigvaris, Inc. a compression garment manufacturer located in Peachtree City. Their video was made to highlight the Faces of Lymphedema.
About Us
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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