Amy Santiago loved to dance. Growing up, the reigning Mrs. Windermere spent countless hours in dance classes and competitions. Then, after graduating high school, she snagged a gig sharing her passion as a dance teacher.
Throughout her dance career, she did notice swelling in her lower extremities. But, she continued to push through it, until she learned the swelling was a symptom of a serious problem.
Doctors diagnosed Santiago with lymphedema. Lymphedema causes severe swelling in various areas throughout the body, most commonly in the arms and legs. It occurs due to blockage in the lymphatic system, preventing lymph fluid from draining well. There are two types of lymphedema — primary, a hereditary form, and secondary, often caused by damage to the lymph nodes after a surgery or cancer treatment.
There is much confusion surrounding lymphedema, even within the medical world, Santiago says. Before finally receiving her diagnosis of primary lymphedema from Health Central Hospital in 2010, she was given numerous misdiagnoses and treatments that caused her to doubt that life would get better.
“The last four years since being diagnosed have definitely been some trying ones, to say the least,” Santiago says. “Never in my wildest dreams did I think I would exchange my dance shoes for custom garments or learn about lymphatic massages rather than a new dance routine.”
After her diagnosis, Santiago redirected her love for the spotlight. She’s become a spokeswoman for the disease and works to provide others affected by it with the comfort and peace she found through her doctors at Health Central in Ocoee. She speaks out about her medical journey, sharing her experiences with therapy, doctors and treatments that have been successful. Each person’s condition is different, but Santiago knows the mere realization that help and support is available can change a life.
“It wasn’t until I got under the Orlando Health umbrella that I got the answers I’d been searching for my whole life,” she says. “I found hope.”
Furthermore, after being crowned the 2014 Mrs. Windermere earlier this year, Santiago will participate in the Lymphatic Education and Research Network’s 2014 Walk for Lymphedema & Lymphatic Diseases Sept. 14, in New York, to raise money toward finding more answers about lymphedema.
After the disease forced Santiago to retire from dance, she found comfort in glamour, working as a makeup artist for Mac Cosmetics, where she rose quickly through the ranks.
“Makeup allows me to get glam and feel fabulous, despite what I may be going through, and, at times, (makes) me forget that I am even living with this,” Santiago says.
But, she later realized that instead of hiding from it, she wanted to embrace it.
“Concealing this would not be a faith-filled journey,” she says. “There is a greater need and purpose to highlight this understated medical condition that affects millions of people.”
At the beginning of 2014, Santiago was approached at an event in Windermere with the opportunity to compete in the Mrs. Florida-America Pageant — a chance to spread awareness for lymphedema across the state. She was crowned Mrs. Windermere 2014 and was awarded “Most Beautiful” overall in the pageant.
“This is the door that God has opened for me,” Santiago says. “It is my chance to have my platform heard and I want to share my story with anyone and everyone who wants to listen.”
Since then, new opportunities continue to arise. She recently joined forces with the National Lymphedema Network to create educational kits and videos to inform patients about their new diagnosis. Santiago became the spokesmodel for these videos and finished filming in July.
She also will attend the National Lymphedema Conference in Washington, D.C., where she will work one-on-one with doctors and patients, see the latest technology and share how she and other patients can continue to live with lymphedema.
“My hope is to be a facet of some kind from not only the patient standpoint but also the support standpoint,” Santiago says. “To present what’s working in treatment and what’s not working and help people know what doctors to see and what garments are best for them, personally.
“We just don’t have the spotlight on lymphedema. It’s not getting the support from Congress,” she says. “They won’t pay for garments, which is the No. 1 way to treat it. My hope is to bring awareness to it, that we start getting Medicare and Congress and people to start jumping on board.”
Contact Shari Roach at [email protected].
WHAT IS LYMPHEDEMA?
Lymphedema is an abnormal collection of high-protein fluid just beneath the skin. This swelling, or edema, occurs most commonly in the arm or leg, but it also can occur in other parts of the body including the breast or trunk, head and neck, or genitals.
Lymphedema usually develops when lymph vessels are damaged or lymph nodes are removed (secondary lymphedema) but also can be present when lymphatic vessels are missing or impaired due to a hereditary condition (primary lymphedema).
Source: National Lymphedema Network
HOW TO HELP
For more information about the Lymphatic Education and Research Network’s 2014 Walk for Lymphedema & Lymphatic Diseases Sept. 14, in New York, or to donate, visit lymphaticnetwork.org.