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.
Breast milk was replaced with MCT-based formula. There was a lack of support for lymphedema until 1 year of age, then Amiya was put into circular-knit burn garments. As a toddler, the swelling was mostly in her right arm and abdomen, but very minimal in the leg. No night-time compression was implemented.
Around age 5, Amiya’s swelling significantly increased in her leg and became progressive, with the most extreme swelling in her lower leg - her knees and below. At that time, she was switched to a flat-knit custom garment, after trial-and-error with multiple compression garment brands and certified fitters. She also started night-time compression.
Today, Amiya uses a pump to break down her fibrosis, as well as multilayer bandaging for her chronic swelling. In addition, Amiya must see an endocrinologist every three months to monitor her growth and treat additional issues. And her Intestinal Lymphangiectasia requires Amiya to see a gastroenterologist each year to monitor and treat her gut issues, diarrhea, etc.
Genetic testing thus far has been unremarkable. According to the Lymphedema Classification Guidelines, it has been determined that Amiya actually has WILD Syndrome (Warts, Immunodeficiency, Lymphedema and Anogenital Dysplasia), for which there is currently no genetic testing available.
A low-fat diet works well in helping to maintain Amiya’s swelling. Her mother cooks and bakes with 100% pure MCT oil, which bypasses any impact on the lymphatics. Amiya also takes supplements, such as fat-soluble vitamins (Vitamins D,E,K,A – “DEKAB plus”), extra Vitamin E drops, high-dose Vitamin D injection every 3 months; 1000mg Calcium twice a day, Essential fatty acids (Omega 369), and Synthroid to treat the thyroid hormone leaks in her gut.
Dr. Sood shared that internet research and social media have been great sources of information on Amiya’s rare condition. And their experience working with Dr. Shelley DiCecco at Camp Watchme was life-changing.
