Season 2, Episode 6

 What in the world is lymphedema?

Maddie Jo Stephens

Jamie Stephens moved to Lower Arkansas from Louisiana, so she was rightly confused when I told her the name of my podcast. But she’s been here for about seven years and she and her family are adapting to “Life in LA”, even though they’ve run into a challenge they weren’t expecting in the process.

“My daughter Maddie Jo was diagnosed at six years old with primary lymphedema which means that she was born with it” Jamie told me.

Lymphedema is tissue swelling caused by the buildup of high-protein rich fluid in the extremities. Primary lymphedema begins at birth while secondary lymphedema is acquired following trauma or cancer.

Jamie first noticed Maddie Jo’s condition following dance class when she was six. The day had begun like so many others.

“I got her home that evening,” Jamie told me.  “I was changing her shoe and her foot was two times bigger than the other one. I thought she broke it but it wasn’t broken.”

So began a search for a doctor with experience in treating primary lymphedema. They sought treatment in Magnolia, Little Rock, Shreveport and eventually got the diagnosis in Dallas. Many of the doctors she’s talked with have told her that she knows more about the condition than they do.

“It's not their fault, they don't tell you in medical school,” she said. “They spend less than 24 hours on the lymphatic system because it was considered not as important to body as say the circulatory system. In the last 10 to 15 years, they’ve come to find out it is just as important.”

While there is no cure, there are some treatments such as massages that can help to reduce the swelling.  Compression also helps, which requires the use of bandages, stockings or special garments.

One of the biggest issues facing children with the condition is finding shoes they can wear.

 “Kids with lymphedema in their feet cannot wear mainstream shoes,” Jamie explained. “If they do, you have to buy two pairs in two different sizes to make one pair and it's only certain brands that are like $100 piece so you buy two pairs to make one pair and that other pair has no use.”

Special garments may be required, but those are expensive also. A custom-made garment from Germany may cost $1,200 and the child may outgrow it in just months.

How has Maddie Jo adapted to the condition? It must be difficult with her classmates, I mused.

“Thankfully she's always gone to Emerson (Public Schools) and they love her,” Jamie said. “She's a butterfly, she does not let it get her down.”

If she notices other children staring at her, Maddie Jo takes the opportunity to strike up a conversation and explains the situation, giving a short course on lymphedema.

Her condition has led her to lots of new experiences:

• She was named the 2024 Ambassador for Children’s Hospital in Dallas, Texas;
• She connected with Ryan Seacrest and the American Idol judges through video message, and recently met Seacrest in person;
• She landed the role of Chip in Magnolia Arts’ production of Beauty & The Beast Jr.

Maddie Jo doesn't let the condition get her down and Jamie says she is always smiling, bubbly,  and eager to make friends. Her favorite saying is, "I love everyone, but I love Jesus more, even more than you, Momma."

Maddie Jo’s condition has led her mom to start a foundation, the purpose of which is to empower children battling primary lymphedema by providing essential support. This includes assistance with shoes and compression gear, but also to promoting awareness of the condition.

 One of the ways the foundation is promoting awareness is through a special event coming up March 2 at the Barn at Big Oak Hill near Emerson. A 5K Color Walk/Run will kick off at 10 a.m.  Participants will be doused with different colors at each kilometer mark, creating a unique outfit to mark the occasion.

 “We encourage all who participate in the Color Walk/Run to wear white shirts and shoes that you don’t mind getting color on,” Jamie said. After the walk/run, join us for live music by Brooklyn Fogle, great food by Crayston BBQ and shaved ice from Sub-Zero New Orleans Style Shaved Ice.

 There will also be information tables with brochures and T-shirts for sale. To register to run or walk, visit jorising.org or come early for the event to register in person. You can also follow Jo Rising on their Facebook page.

Hear my interview with Jamie by clicking below and share this post to help get the word out about the event and lymphedema.