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Former UMD gymnast battling rare incurable disease plans surgery to combat illness
Former University of Maryland gymnast, Alexandra Robinson, has primary lymphedema, but she's not letting it stop her from pursuing her goals.
WASHINGTON (FOX 5 DC) - Former University of Maryland gymnast, Alexandra Robinson, has primary lymphedema, but she's not letting it stop her from pursuing her goals. She's planning to undergo multiple surgeries that will help lead to a more normal life for her.
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"I have never met another gymnast who has dealt with this disease because it’s just so rare," Alexandra Robinson told FOX 5.
Robinson, a former University of Maryland gymnast who lives in DC, has primary lymphedema. She was diagnosed at the young age of 15 years old.
"Obviously that’s a very hard time in your life to start swelling when you are in high school," Robinson said.
Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg, according to the Mayo Clinic.
Robinson specifically has primary lymphedema which means she was born with the condition. With her visible swelling, questions and concern came from family and friends.
"You always have eyes on you at all times. It is really uncomfortable especially if you don’t know people, they’ll just come up to and ask."
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To treat this incurable condition, Robinson will have liposuction and lymph node transfer surgeries performed by Dr. Wei Chen at the Cleveland Clinic.
"I have six surgeries," she said. "Three surgeries on each leg."
Robinson hopes the lymph node transfer surgery will help her manage her lymphedema for the rest of her life.
"I wish that insurance companies realized the impact that these surgeries have on people and make it more accessible to those who really need it."
In addition to surgery, Robinson seeks physical therapy once a week at MedStar Georgetown University Hospital to keep her lymphatic fluids flowing, manually.
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"I never realized how much I can help others but also inform people who may not know about this disease."
With the help of her mother and Facebook support groups, Robinson wants to educate and encourage others about lymphedema.
"I want people to know they are not alone. I felt so alone in my entire process of figuring out what was wrong with me. And finding the right resources that I needed so I just want to be able to be that resource for some people if possible. I want people to be able to know it’s manageable there are things you can do."
Robison shared her surgery journey on her GoFundMe.