Legaleyess: How One North Texas Woman is using TikTok to Build Community for People Like Her
The story of how AGENZ's Jenny Hamad is using her platform to raise awareness
By: Matthew Cornell
You might've seen her walking around the University of North Texas’ campus, met her in Sycamore hall, or even shared one of your PR classes with Jenny Hamad without recognizing anything different about her. She goes to school and lives her life just like you and I do. However, there’s something about her that makes her unique: she has Stargardt disease.
What is Stargardt Disease?
According to The National Library of Medicine’s informational service, MedlinePlus, Stargart disease is a genetic form of macular degeneration. It affects approximately 1 in 8,000-10,000 by damaging the retina and causing cellular degeneration in the macula, which is the part of the eye responsible for strong central vision. As a result, those diagnosed with Stargardt disease have difficulty seeing details in the center of their vision, worsening past the point of legal blindness for many. The disease often has an early onset, with many diagnosed sometime between childhood and early adulthood. And like many, this is what happened with Hamad.
Where it Started
"My vision was nearly 20/20, everything was perfect,” Hamad shares, recounting where her story began. “Once my freshman year of college started, it started happening in my left eye, and then it slowly started developing in my right eye."
She shares that she first thought that she was just tired and experiencing eye strain, dismissing it for several months before a friend suggested she go and see a doctor. At that point, she was having some difficulty reading in her classes. But what had begun as an odd ring around her central vision began to get worse. After going to several doctors and specialists, she was diagnosed with the disease.
This was difficult for Hamad and she admits that it took her a few months to come to terms with the knowledge of her diagnosis. She had recently gotten her driver’s license but knew it would only be a matter of time before she would have to stop driving. Additionally, she had to share the news with her parents, which was a difficult experience.
“It was a huge slap in the face for my parents,” Hamad says. "I had never seen my dad cry before, and for the first time I saw him cry. It was hard."
Despite the difficulty during this trying time, it isn’t where her story stops.
Her Presence on TikTok
Recently, Hamad decided that she should use the PR skills she’s gained to try and help others like her. She had an idea which was sparked during time spent in her PR Communications class. One of her assignments required her to create a PR campaign for an organization that would accomplish a strategic goal. Hamad chose to focus on a cause she cared about, proposing a plan designed to build connections between Gen Zers like herself and the Retina Foundation of the Southwest, which focused primarily on young kids and older adults. One of the objectives in her plan was to get in touch with a TikTok influencer, inspiring her professor to suggest that she become the influencer herself.
She did just that, starting the account @legaleyess in March of 2022. Her first video was an introductory one, allowing her to introduce herself, her cause and the purpose of the account. She then posted another video a day later sharing the story of her diagnosis and answering a few common questions. She’s continued to create more content since then and gain some followers as she’s covered other topics related to the Stargardt disease, sharing more of her life and experiences and continuing to answer questions about it along the way. While many use the platform to get famous and appeal to a massive audience, that’s not her goal.
"What I'm trying to do now is spread awareness about what it is, because when I tell people about it nobody knows,” she said passionately. “ Nobody has any idea what that is.”
She shares that while others may try to use TikTok to provide entertainment or voice their opinions, she’s using it to build a community.
“There are not a lot of people that really have it,” she shares. “I feel that if I can connect to others that do, they can gain the comfort, support and relatability that we're all looking for."