Former GymTerp Robinson’s Battle With Lymphedema

It all started when she was 15. Former University of Maryland gymnast Alex Robinson began to feel swelling in her right leg after suffering a fracture. She participated in rehab for a year, but after finishing, the swelling stayed the same. Robinson just played it off, thinking it was an extended side effect of the fracture and continued training as a competitive gymnast. 

Little did she know she had lymphedema. 

“I just thought I swelled in my leg and would make up excuses as to why it may be,” said Robinson, 24, who is currently residing in Washington D.C., working for the U.S. Senate. She was a member of the University’s gymnastics team from 2015 until graduating in 2019 but was only able to compete in her freshman and senior years.

When arriving at the university as a freshman, Robinson would compete on and off. The swelling in her legs was still present, but she continued to play it off and taped the affected leg up to her mid-calf. 

Her trainer and coach became concerned as to why her leg was swelling and sent her to visit a specialist. This was when she was first diagnosed with lymphedema, 

“Once she was diagnosed it made more sense why her legs weren’t comfortable. But her toughness really stood out to me. She never let it affect her training, determination, or willingness to give 110 percent at practice every single day,” said gymnastics head coach Brett Nelligan.

Lymphedema, or lymphatic obstruction, is a long-term condition where excess fluid collects in tissues causing swelling (edema). The lymphatic system is a part of the immune system and vital for immune function. A fluid called lymph circulates within the lymphatic system.

There wasn’t much known about the disease at the time of her diagnosis. The doctor just told Robinson to be careful. 

“I wasn’t worried after being told that I had lymphedema, since at this time nobody knew the severity of it. I just continued to live my life as I normally would,” Robinson said.

After training extremely hard at school over the summer, Robinson went into her sophomore year in her peak condition. She was ready to fully compete and excited for a better season ahead. However, just two weeks before the first meet, Robinson was practicing her floor routine and felt excruciating pain after a tumbling pass. Once getting an x-ray and MRI, she learned she had torn her ACL and would need reconstructive surgery. 

Although Robinson’s surgery went well, her recovery did not. While most people recover from a torn ACL in about nine to 12 months, it took Robinson two years, which meant she missed her sophomore and junior seasons. 

The slow recovery was due to the lymphedema, but Robinson was unaware at the time. 

“When I tore my ACL I thought there was just something wrong with me. I thought I was the one who couldn’t come back fast enough, and that was really frustrating,” Robinson said.

After a long recovery, Robinson came back stronger than ever during her senior year. She competed in eight meets on bars and 11 meets on the floor, including the Big Ten Championships and the NCAA Athens Regional. She succeeded professionally too, receiving a variety of job offers before graduation. 

“Alex had many key performances [during her senior year] that helped us secure our spot in the NCAA Championships. Between dealing with lymphedema and recovering from a torn ACL, it was just incredible what she was able to do,” Nelligan said.

Despite her success, the leg swelling continued. Which led Robinson to decide to meet with a lymphedema surgeon at Johns Hopkins after her senior season. She was told to try several tricks to reduce the swelling before trying surgery. With her new-found methods to prevent the swelling, Robinson practiced them religiously while moving to California for a new job. 

In moving across the country to California, Robinson worked for presidential candidate Tom Steyer as a speechwriter. She lived there until 2020 when she moved back to the D.C. area to pursue her current position in the U.S. Senate as a Press Assistant for Majority Leader Chuck Schumer. Due to the pandemic, she couldn't go into work, but her job keeps her busy even when working from home. 

“It was especially hard for me to move during a pandemic as the disease I have makes me susceptible to infection, so that was definitely a risk that I took,” Robinson said.

Robinson decided upon her return to the D.C. area to schedule a surgery, as the therapies and techniques to reduce the swelling weren’t working. The surgery took place on January 21, and she felt confident going into it as she was overly excited for the swelling to finally ease. 

However, the surgery was unsuccessful. 

Fighting one battle after another, Robinson wanted answers. She met with a surgeon, who is an expert in lymphedema in Cleveland, Ohio, on February 19. The surgeon informed her that she has primary lymphedema: a rare disease found in one of 6,000 people. 

She learned that she was born with a compromised lymphatic system that is unable to pump lymph fluid properly and that it would take six different surgeries to try and repair the damage that was created in her legs. 

Wanting nothing more than to heal, Robinson agreed to the surgeries. The first surgery is scheduled to take place on May 18, 2021.

Of all of the people who have been there for her throughout this long journey, Robinson says that her mother is the person who has helped her the most. According to her mother, Mia, it has been so difficult to watch her daughter struggle with this disease, but she is so proud of how strong Alex has been. 

Among the others who have shown national support to Robinson is UFC President Dana White. Robinson’s aunt Lenee Breckenridge, who is the Vice President of Communications for UFC. White shared a post on his Instagram story at the start of the month to draw awareness to Robinson’s battle. 

Now, as she is more informed about the rare disease she has, Robinson wants to spread her story. She created a GoFundMe that explains her journey and educates people on the condition. She also has joined several lymphedema support groups to link with other people experiencing the same disease.

“Before, I was so embarrassed by my legs. I tried to hide them whenever I could, but now If my story can help one person get the help they deserve, I want to do it,” Robinson said.