Luke Wiggins was always great at basketball because of his height and long arms and legs. But it never occurred to his mother that these characteristics were signs of something more serious.
In July 2020, the 17-year-old was diagnosed with Marfan syndrome, a disease of the connective tissue, according to the Marfan Foundation. The lack of awareness around the disease is part of the reason why Wiggins and his mother, Kelly Beckett, reached out to Gov. Andy Beshear’s office requesting a proclamation to declare February Marfan Syndrome Awareness Month.
“It’s really a big deal, because young people with this disease are all pretty similar,” Wiggins said. “They’re tall, they’re long-armed, long-limbed, all of that. It really is an advantage in sports at a young age. But another symptom of the disease is your heart gets enlarged, and playing all these contact sports can cause it to rupture. It can be life-threatening.”
However, the biggest problem with recognizing the disease is that because of its rarity it tends to go unnoticed by most doctors and pediatricians until it’s too late.
“The outward signs are not the things that will kill you,” Beckett said. “Those are just the things we want people to recognize. Honestly, none of Luke’s doctors until he was in middle school even mentioned Marfan syndrome. A lot of pediatricians don’t think of it offhand as something they need to think about because it’s so rare.”
Marfan syndrome affects one in 5,000 people across all genders, races and ethnicities, according to the Marfan Foundation, Symptoms can include long arms, legs and fingers, tall and thin body type, curved spine, chest that sinks in or sticks out, flexible joints, flat feet, crowded teeth and stretch marks unrelated to weight gain or loss. People with Marfan syndrome are also 250 times more likely to have an aortic dissection, or tear in the artery that takes blood from the heart.
“The problem with Marfan syndrome is that it’s a genetic disorder of your connective tissue,” Beckett said. “It’s like the glue in your body doesn’t work properly. Your joints, your muscles, your heart…nothing is supported or sturdy the way it should be. It impacts the whole body, head-to-toe.”
But it was no short road to receiving a proper diagnosis. Because of the rarity of the disease, Beckett said it wasn’t until middle school when the family’s new doctor first mentioned Marfan syndrome as a possible diagnosis.
“It was a process of about three years simply going through all the testing because, in middle school, the echocardiogram only showed a small enlargement,” she said. “But we were lucky in the sense that he did have the a sunken chest where we needed to get that fixed and surgically repaired. We were able to continue seeing different specialists at that time and his heart was monitored every six months. That’s where we started realizing in the last year, and we were able to get some genetic testing done.”
About 75 percent of those with Marfan syndrome received it genetically from a parent, while the other 25 percent develop a spontaneous mutation, according to the Marfan Foundation. Beckett said she believes Wiggins received the trait from his father, but that he hasn’t been tested. However, the exact cause isn’t too important as there are no variations in the disease based on how it developed.
It is common for those suffering from Marfan syndrome to be involved in sports because their long limbs give them a natural affinity for it, Beckett said. Because of this, Wiggins was involved basketball, and he said his love the sport made the diagnosis was difficult to accept.
“Dealing with it was pretty hard,” he said. “I’d played basketball since I was about 3. It’s what I did for most of my life, so I had to figure out new things.”
The diagnosis didn’t come any easier to Beckett, who felt worried in the beginning of the struggles her son would face for the rest of his life.
“I think for me, as a parent, it was the saddest day of my life because to see your child so upset and know that they’re going to have to face a disease that there’s no cure for and it’s now going to be a part of him for the rest of his life, it’s really hard,” Beckett said. “Where it is rare, you don’t have a lot of support groups where you can talk to people, so it can be isolating.”
The family was able to connect with a Marfan syndrome specialist at the University of Kentucky Hospital, which eventually connected them to the Marfan Foundation.
The Marfan Foundation was attempting to have all 50 states declare the month of February Marfan Syndrome Awareness Month. Wiggins wanted to get involved in raising awareness for the disease, which led him to reach out to the governor’s office.
Both Wiggins and Beckett said the proclamation from the governor’s office is a step in the right direction toward bringing awareness to the disease.
“I really just want to help any other people that could be like me in being diagnosed with it,” Wiggins said. “There are a lot of people who have and have no been diagnosed.”
Beckett reiterated that awareness is key when dealing with this disease, as some of the consequences, particularly for those unknowing individuals involved with athletics, can be deadly.
“That’s what researchers believe is about half of all people who have Marfan syndrome don’t even recognize they have it,” Beckett said. “You have these people, like him (Wiggins) who are playing in varsity and collegiate-level sports that don’t even realize they have it. We didn’t want any family to find out about Marfan syndrome through an autopsy report, and that’s sadly something families deal with with this disease.”
Wiggins said he felt overjoyed when he received the proclamation from the governor’s office in the mail.
“It was really exciting when it came in the mail,” he said. “I got a lot of reaction from my friends when I showed it to them, and it’ll be interesting to see if anyone else reaches out, but I was really excited to hear back.”
The family even received a message from another family in Georgetown struggling with the disease and was able to schedule a video call to share their respective stories.
Beckett, who is a social studies teacher at Royal Spring Middle School, said she’s very proud of the man her son is becoming through all the adversities associated with this disease.
“A big part of my life is telling these kids that they need to be involved in government and use their voice,” she said. “It (the proclamation) was a really proud mom and teacher moment.”
Since his diagnosis, Wiggins has been involved with more academic activities, given motivating speeches to basketball teams and his school’s youth salute program, where he acts as leader for his class. But he said his experience with Marfan syndrome has made him interested in pursuing a career in the medical field.
“I’ve been working on doing really well in school so I can become what I want to become,” he said. “I want to become something healthcare-related, and I want to be able to get there successfully.”
For more information on Marfan’s syndrome, visit www.marfan.org.
Kyle Woosley can be reached at email@example.com.