Schreiber High School senior Mazzy Sass is working to raise awareness about Marfan Syndrome, a genetic condition that affects the body’s connective tissue, which holds all the cells, organs and tissue together.
“On March 24, 2021, I went to sleep standing at 5-foot-7 inches and woke up the next morning at 5-foot-11. It sounds unbelievable, but it’s true,” Sass told the Nassau County Legislature at its Sept. 23 meeting. “My sudden height increase wasn’t a growth spurt. It was the result of skilled orthopedic surgeons who inserted a titanium rod and 28 screws into my spine to correct a severe curvature caused by my Marfan-related condition.”
Nassau County Legislature Minority Leader Delia De-Riggi Whitton invited Sass and her family to the Legislature meeting to honor her advocacy for establishing a Marfan Awareness Day in Nassau County.
“[Sass] and her family have overcome moments of adversity to become tireless advocates in a quest to raise awareness about an important issue affecting many Americans,” DeRiggi-Whitton said.
Marfan Syndrome affects about one in 5,000 people, and three out of four with the condition inherited it from a parent, Sass said.
“Over 90% of people with Marfan Syndrome face serious cardiovascular complications that cause the aorta to weaken and enlarge, leading to life-threatening aortic aneurysms or dissections,” Sass said.
While Sass has been spared the most severe cardiovascular issues, she said she has dealt with complications affecting her eyes, joints and skeletal system, which are also common with Marfan Syndrome.
Marfan Syndrome is a treatable condition, but the average life expectancy of someone undiagnosed is just 45 years old, Sass said.
“Tragically, almost half the people who have Marfan Syndrome are unaware of it. That’s why I’m here advocating for a Marfan Awareness Day,” Sass said. “Awareness is the most powerful tool that we have. And Nassau County is fortunate enough to be home to the Marfan Foundation, headquartered in my hometown, Port Washington.”
The Marfan Foundation is a nonprofit organization that saves and improves lives by creating a community for people with genetic aortic and vascular conditions, such as Marfan, Loeys-Dietz and Vascular Ehlers-Danlos.
“They’ve touched countless lives, and their work is a true asset to our community,” Sass said.
Sass has spent significant time raising awareness for Marfan Syndrome and other related disorders by serving as a camp counselor at a Marfan Foundation-sponsored camp and volunteering at fund-raising events for medical research.
“I’ve done my part, and I’ll continue to do so,” Sass said. “I hope Nassau County and New York State will join me in this fight. Together, we can raise awareness and save lives.”
