Lymphie Stories

A conversation with Emma Detlefsen, the girl in the purple cape

“Maybe at first people are like, ‘Who is this kid?’ But usually after I talk, they realize that I kinda know what I’m talking about."

For the most part, Emma Detlefsen is like most kids her age.

She loves to hang out with friends and enjoys dancing, having taken classes in ballet, tap, and jazz since she was three. She’s performing with her community theatre group playing the role of a Southern grandmother named “Granny Pearl,” and when she has time she likes to watch videos on YouTube.

Unlike most elementary schoolers, however, Emma has a unique after-school activity: she’s an advocate for lymphedema research and legislative change.

Emma Detlefsen stands in front of a pair of doors in the US House of Representatives.
Photo courtesy Emma’s Incredibles.

The Incredible Emma

“I was born with lymphedema,” says Emma, who has primary lymphedema in both legs and has been hospitalized multiple times with lymphedema-related infections. “When I was little, I didn’t like therapy at all. My mom felt like no one knew how to help me.”

Her mother Tiffany had turned to Facebook for support. There, she met Jen Looby, whose son Connor has lymphedema.

Looby told the Detlefsens about the Lymphatic Education and Research Network (LE&RN) and how her own family has fundraised for the organization to promote lymphedema research; Tiffany knew this would be a great opportunity to help Emma in more ways than just therapy.

In September 2014, Emma and her family created a fundraising team, “Emma’s Incredibles – Team Lymphedema,” and participated in their first fundraising walk for LE&RN. Emma was joined by friends and family – all clad in purple, her favorite color – as they walked across the Brooklyn Bridge in the name of lymphedema awareness.

Emma and her family pose together on the Brooklyn Bridge.
Emma, her parents, and brother wearing purple at the 2014 LE&RN walk. Photo courtesy Emma’s Incredibles.

LE&RN honored Emma’s advocacy efforts the following March with a resolution at the New York State Capitol; soon after, she received a congratulatory letter from actress Kathy Bates, who is a spokesperson for LE&RN and a lymphedema patient herself.

At another LE&RN fundraising walk later that same year, Emma was acknowledged again for her efforts and officially became a LE&RN Youth Ambassador.

“My mom says that’s when we knew this was bigger than just helping me,” says Emma. “We knew we could help others with lymphedema, too.”

Emma and her mom make the ultimate mother-daughter team, organizing various fundraising efforts and traveling to Washington, D.C., to lobby for the Lymphedema Treatment Act.

The young advocate says she and her mom really enjoy trying to make life with lymphedema better for those affected, and find the work empowering.

“To me, advocacy means doing everything I can to educate more people about lymphedema,” Emma explains. “It means raising money for a cure, it means passing bills to make sure what we need is covered by insurance, and it means finding ways to give me as healthy a life as we can.”

Emma and her mom pose together during one of their trips to Washington, D.C.
Emma and her mom, Tiffany, during one of their trips to Washington, D.C. Photo courtesy Emma’s Incredibles.

“Who is this kid?”

At ten years old, Emma has accomplished more than most people twice or even three times her age, from speaking at congressional meetings to giving an interview on the Dr. Phil Show. She’s even met her fellow LE&RN ambassador, Kathy Bates.

“Meeting Kathy Bates was very special. She’s famous and she wanted to meet me,” says Emma, who has met Ms. Bates multiple times now at various advocacy events. “She dedicated her star on the Hollywood Walk of Fame to me and my family, so I felt like she thought I was doing a good job.”

Kathy Bates and Emma pose together in Washington, D.C.
Emma and actress Kathy Bates, LE&RN spokesperson. Photo courtesy Emma’s Incredibles.

“I feel proud that I am advocating for everyone with lymphedema, not just trying to help myself,” she continues.

“Every time we go to D.C. I feel proud, too. The days are harder and longer than my school days. We work really hard, and I’m really proud to know that I’m only 10 and I can really get things done for people with lymphedema.”

They say you should dress for the job you want, but Emma seems to dress for the job she already has: whether she’s manning a lemonade stand to raise funds for lymphatic research or marching up the steps of the Capitol building, Emma can often be spotted wearing her signature purple superhero cape.

People around her local community are starting to know the girl in the purple cape, too, as Emma was recently honored as a “Woman of Distinction” by her community in recognition for her advocacy work.

Emma does face her fair share of difficulties along the way, however.

“One time we were in D.C. and I did meet a grumpy health law advocate who told me I shouldn’t be lobbying because the Lymphedema Treatment Act wouldn’t help me, so she didn’t know why I was there,” Emma recalls.

“I felt sad, but I also knew she was wrong, so I just smiled and closed my eyes because I was rolling them.”

The more Emma talks about lymphedema to others, the braver she feels. “Maybe at first people are like, ‘Who is this kid?’ But usually after I talk, they realize that I kinda know what I’m talking about.”

“It’s important to show lawmakers that lymphedema doesn’t just happen from cancer treatment,” she emphasizes. “I was born with it and no one knows why.”

What does World Lymphedema Day mean to Emma Detlefsen?

Emma believes World Lymphedema Day is a day just for people with lymphedema. “Every person in the world with lymphedema deserves an easier life. If we research lymphedema, I think we can find ways to make it better.”

“I think everyone with lymphedema should do something to advocate on March 6,” she continues. “The more people who talk about it, more people will hear. Wear teal and tell people why, donate to your favorite lymphedema organization — every little thing helps.”

Every World Lymphedema Day, Emma visits her state capitol along with LE&RN to honor someone for their advocacy work. She’s been doing this since she was six years old, when she herself was honored.

Emma shaking hands with New York State Senator George A. Amedore, Jr.
Emma shaking hands with New York State Senator George A. Amedore, Jr. Photo courtesy Emma’s Incredibles.

At the end of the day Emma is still a ten-year-old girl, but her passion for advocacy affects all aspects of her life.

When her class was doing a lesson on Martin Luther King, Jr., Emma had the opportunity to speak to the class about participating in government. Afterwards, the boys wanted to advocate for better pizza at lunch: “Lymphedema is important to me, and the boys really care about pizza, so maybe I inspired them?”

“Most of my friends are ten so I don’t think they really understand what I do,” says Emma. “It’s hard to explain it, you just have to do it. But I know they think I’m brave.”

We sure think you are, too, Emma!

Keep up with Emma and her team of Incredibles on Facebook.

2 comments on “A conversation with Emma Detlefsen, the girl in the purple cape

  1. Janice Giorlando

    My heart goes out to all those who have primary lymphedema. I have only had it for 40 years after cancer surgery. I had a perfectly healthy 46 years prior to that. Those of you who are advocates are doing a fantastic job. Keep up the good work Emma and Alexa!

  2. Emma is a beautiful soul, and an inspiration ! I am proud to know her (and her family, for nearly 30 years).

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