By: Mallory Bachmann
When Lena Loyd arrived on campus her freshman year, she knew college would require a new level of independence. What she did not anticipate was how often she would draw on the self-advocacy skills she developed while learning to manage Tourette syndrome.
When the Symptoms Began
Halfway through her seventh grade year, Lena began experiencing sudden movements and vocal tics that she could not control. What started as confusing and sometimes frightening symptoms led to several emergency room visits before she was referred to the Norman Fixel Institute for Neurological Diseases at UF Health. There, Lena was diagnosed with Tourette syndrome, a neurological disorder characterized by involuntary movements and vocal sounds known as tics.
After her first visit to Fixel, Lena began Comprehensive Behavioral Intervention for Tics, or CBIT, with occupational therapist Heather Simpson Martin, OTD, OTR/L. CBIT is a non-medication-based therapy that teaches individuals strategies to better manage tics and reduce the impact symptoms can have on daily life. While it is not a cure, the therapy can help improve symptom management and overall quality of life.
For Lena, the therapy became an important foundation for learning independence and self-advocacy before transitioning to college.
“Heather helped me learn more about how to advocate for myself, which was a big help with transitioning into college and finding resources,” said Lena.
Navigating the College Transition
The transition to college gave Lena an opportunity to apply the self-advocacy skills she developed through therapy and care at Fixel. Before her freshman year began, Lena arranged accommodations, met with professors and openly discussed her condition to ensure she had the support she needed to succeed.
“Some of my professors were familiar with Tourette syndrome, but many had only heard of it and didn’t really understand what it was,” said Lena.
Lena quickly realized that each semester would bring a new set of classmates and professors. Unlike high school, where she spent four years with the same group of peers, college meant frequently meeting new people and having to explain her diagnosis and the symptoms that come with it.
“It’s a love-hate relationship in a way,” said Lena, “Being in a position where I have to explain myself, but also knowing I can do good in that position.”
Learning to advocate for herself in the classroom was an important part of Lena’s transition to college. Like many first-year students, she also faced the challenge of building new friendships and finding her place on campus. While that adjustment took time, she remained connected to a familiar source of support: the Alachua/Clay Tic Disorder Support Group, which she joined shortly after her diagnosis. During her freshman year, she became increasingly involved in the organization, taking on greater responsibilities and becoming more active in its leadership.
Building a Community
By the end of her first semester, Lena transitioned from a participant to a leader. By organizing meetings and events to partnering with other organizations, she now helps create a welcoming space where individuals and families affected by Tourette syndrome can connect, learn and support one another.
For Lena, one of the greatest benefits of the group is the sense of community it provides, particularly for those who are newly diagnosed and navigating unfamiliar challenges.
“When I was first diagnosed, I didn’t know anyone else who had it,” said Lena. “It’s important to know you are not alone and have people who understand what you’re going through.”
The group provides both social and educational support while encouraging members to advocate for greater understanding of Tourette syndrome in the community. One of its largest outreach efforts takes place during Tourette Syndrome Awareness Month (May 15–June 15), when members gather to create artwork and messages on Gainesville’s iconic 34th Street Wall. This 1,120-foot-long landmark has served as a community canvas and public bulletin board for decades.
The support Lena found after her diagnosis is something she hopes to pass on to others. As she continues her studies, one of her goals is to create a support group on her college campus for students with Tourette syndrome and tic disorders. She envisions a welcoming environment where students can talk openly and exchange advice as they navigate college life.
For those living with or recently diagnosed with Tourette syndrome, Lena wants to spread the message to live your life proudly.
“Being different is a strength,” said Lena. “It gives you perspectives and experiences that you might not have otherwise. Even when things are frustrating or difficult, there is value in trying to find the good in the situation.”
To learn more about Tourette syndrome and the resources available through the Fixel Institute, visit our Tourette Association of America Center of Excellence.
If you are interested in supporting the Tourette’s program at the Fixel Institute, visit our donation page: https://giving.uff.ufl.edu/giving-opportunities/017185-criser-family-fund-in-the-fixel-institute/
For information on upcoming meetings, events and community activities, visit the Alachua/Clay Tic Disorder Support Group Facebook page.